Seeming futility of Fasano Diet with DH

[cyclinglady]

Most members who are no longer active on the forum and leading normal, healthy lives.  The few active old timers are here to help new members.  Not everyone remains ill.  Think about that.  

[fourchickens]

I recommend giving the diet the whole time suggested.  It does take time for things to cycle through your system.  Dairy is particularly pernicious--people react up to a month after consuming dairy.

Have you looked into other causes of skin problems (I mean, in addition to DH)?  It might be helpful to keep a diary of what you are eating and when you have flare ups.  I do this in my planner (I use the Bullet Journal system which allows you to create your own planner out of any notebook you have).

FWIW: I react to eggs themselves with eczema (believe me, I get the funny in this).  This means I can't eat a plate of eggs.  I can eat them sparingly in baked items (where it's like 2 eggs for a whole cake and therefore the amount I eat per slice is quite small).

I also have a thing called Oral Allergy Syndrome (also known as Food Pollen Syndrome).  It's where you have environmental allergies (to things like grasses, ragweed, and tree pollen) and then your body mounts a reaction to raw fruits, veggies, nuts, and certain spices that have the same pollen protein signature (it is only caused by things from the plant kingdom).  Often the reaction is itchy mouth or other digestive reactions.   Or it can cause more serious reactions.  Less common but still possible, it can cause itchiness in the skin.  The weird thing about OAS is that cooking food often breaks down the pollen proteins, allowing me to eat the thing.  Sometimes the protein is too strong and even extreme cooking doesn't denature it.  The important thing about OAS is that it is not a food allergy--so food allergy testing doesn't help diagnose it.  The best diagnosis is to see what environmental pollens you are allergic to and then correlate those with the foods that you eat raw.  Please be aware that even a lot of allergists don't know about this.  Here's an article I wrote about it to help others understand the basics:  http://www.artofglutenfreebaking.com/2013/04/oral-allergy-syndrome-oas-or-food-pollen-allergy/

The main issue with OAS is that I can't eat most fruits, veggies, and nuts raw.  It's a PITA but it's not that bad once you get used to it.

Also, have you looked into Mast Cell Activation Syndrome (MCAS)?  It also has a strong skin component.  Here's more info: https://tmsforacure.org/

Again, hang in there.

[squirmingitch]

Alaskaguy,

1) I can't guarantee it, but I do not think you're going to have to be on the Fasano diet for years & years. Here's what I think in regards to myself.... a) I am super sensitive, maybe even super, super sensitive 20ppm is too much for me. Many with dh have a problem with the tiniest amount of gluten.

b) I kept getting let's call it trace amounts of cc simply because I was eating some gluten-free goods. I would have cookies or breads or make pancakes from Bisquick gluten-free pancake mix etc.... Yes, those things are gluten-free & even certified gluten-free, tested & safe but not safe enough for me. It took me a long, long time to figure this out. I have a gluten-free household. Nothing gluten crosses my threshold. I know it can take time for the dh antibodies to get out from under our skin. So I was waiting, waiting, waiting. waiting, all the while not knowing that I was still reacting to the minuscule exposure in those processed gluten-free foods.

c) Also, sometimes I would have Lucy's gluten-free chocolate chip cookies. They have oats in them. I was baking some breads that used oat flour. I used purity oats but still, I was reacting to them. When I figured out the oats were a problem b/c I was getting blisters & digestive problems again then I dropped the items containing oats.

d) I thought I had figured it out. Oats. Then our local store began carrying gluten-free breads. I began reacting again with the blisters & gi issues. Boy, this time I was clueless. What the HELL was going on? HOW was I getting glutened????? I thought & I thought & I thought and then one day it dawned on me that there might be cc with oats as far as the bread went. I called the company & sure enough. OK! Progress right? Yay! So again, trying to be patient. Waiting, waiting, waiting, rash got better but not gone, flares & always some there & at times flaring.

e) I was still eating gluten-free foods - processed foods - gluten-free bullion, canned goods like Bush's baked beans, Black beans, gluten-free pasta, rice, gluten-free peanut butter, preserves, frozen fruits & veggies etc....

And I still had flares, flares that were just not right. I should not have been having such. That's when I went on the Fasano diet. It's the ONLY way to eliminate every trace of gluten.

So you see, it was a step by step thing. Who could know???? In the beginning, I DID only eat Whole Foods, no processed stuff for 6 months but having dh, I also knew the dh may continue despite my eating only Whole Foods. So, it didn't strike me as an issue at that time. 

After about 3 months on the Fasano diet, there was no doubt things were improving and they kept improving. No more gi issues, no more rash flares. 

It's as if I did things backwards but there's no way I could have known that & you can see that each time I "solved" a problem, I found that wasn't the ONLY problem. This is why I think you should try this, calm down your system & be able to begin from ground zero rather than going for years like I did.

I have to go get on dinner so can't answer your other questions right now.

[Alaskaguy]

29 minutes ago, cyclinglady said:

Most members who are no longer active on the forum and leading normal, healthy lives.  The few active old timers are here to help new members.  Not everyone remains ill.  Think about that.  

That's a good point, Cyclinglady, and one that I had in fact noted already, although I had not stopped to consider the full ramifications of the fact that members seem to come and go here, rather than remaining as posters long-term --- because many or most of them heal, and then move on.

[squirmingitch]

If you have never watched this, DO. This will help you understand a whole bunch!

 

[Alaskaguy]

Fourchickens and Squirmingitch, once again, thank you for all that information!

FC, I have heard a bit about OAS, but did not know a great deal about it.  I don't believe that I have suffered from that, but I think I have heard of some people here in SC Alaska who do, probably triggered by the vast amounts of birch pollen that we are inundated with in May.  Once, a few years ago, I was in Anchorage in the spring and the air was so yellow, and the visibility so limited, that you'd have thought that it was due to heavy smog in the air --- but it was birch pollen!  Another time, I was camping outside of Fairbanks in the middle of May, and everything, EVERYTHING was coated with this messy, sticky yellow dust --- it was spruce pollen in that case.  It's a wonder that everyone here does not have heavy allergies.

SI, your experiences seem to remarkably mirror my own to this point on the gluten-free journey (although I did not indulge in any gluten-free cookies, and probably less of the gluten-free snacks or breads in general).  I hope that within a few months I will be able to determine whether the purity protocol oats, and/or the teff (handled and tested to be gluten-free), and/or corn, and/or the gluten-free brown rice pasta, have been causing me problems.  If it's none of those, then I'd have to assume either a) my ongoing DH problems are just due to it still working its way out of my system, or b) that I am getting cross-contaminated from some other, much less likely source of gluten.  I suppose that there is maybe also option c), having gotten more iodine in my diet than I can handle.

By the way, speaking of iodine, if you want to impress your doctors, always pronounce it "EYE-uh-deen" or "EYE-oh-deen", NOT "Eye-oh-dyne".  I know that most of the general public pronounces it the latter way, but that is wrong, and a mispronunciation.  Iodine is a member of the halogen family, all of which have the "-ine" ending, which is pronounced "-een".  I mean, nobody says "Chlor-yne" or "Flour-yne", right?  Sorry, it's just a pet peeve from my days as a chemist.

[Alaskaguy]

PS:  One thing that I am unclear on regarding the Fasano Diet is the use of spices.  Since they do mention that fresh herbs are OK but dried herbs are not, and that freshly ground black pepper is OK but no other spices are mentioned, then I assume that that means that NO other spices are allowed.  Which kind of makes sense (even if it stinks), because most other spices would be purchased ground, meaning that they were ground in some facility that could have also handled a gluten-containing product.  I assume that that is why black pepper is considered OK --- because most people (I presume) have their own pepper grinder at home.

If that assumption about spices is correct, does that mean that as long as I have whole nutmegs, for instance, that I can use them IF I grind them myself at home?  And what about spices that are seeds, such as cumin or coriander or caraway?  Safe, or questionable, or not safe?  It would really help me get through this Fasano Diet if I could season my limited foods (particularly potatoes!) with something more than just black pepper, but at the same time I want to be as safe and as adherent to the diet as possible.

[Ennis-TX]

56 minutes ago, Alaskaguy said:

PS:  One thing that I am unclear on regarding the Fasano Diet is the use of spices.  Since they do mention that fresh herbs are OK but dried herbs are not, and that freshly ground black pepper is OK but no other spices are mentioned, then I assume that that means that NO other spices are allowed.  Which kind of makes sense (even if it stinks), because most other spices would be purchased ground, meaning that they were ground in some facility that could have also handled a gluten-containing product.  I assume that that is why black pepper is considered OK --- because most people (I presume) have their own pepper grinder at home.

If that assumption about spices is correct, does that mean that as long as I have whole nutmegs, for instance, that I can use them IF I grind them myself at home?  And what about spices that are seeds, such as cumin or coriander or caraway?  Safe, or questionable, or not safe?  It would really help me get through this Fasano Diet if I could season my limited foods (particularly potatoes!) with something more than just black pepper, but at the same time I want to be as safe and as adherent to the diet as possible.

Assume your damaged gut is carpet burned on the inside, you do not want to put spices, vinegar, or anything that might irritate it.
Paprika, Chili powder, cayenne, etc. are Nightshades and should be doubly avoided for awhile
Nutmeg, I would be hesitant, back when I was young and stupid we used it as a drug, 6 hour delay but a 12-24 hour high. 
I never had issues with coriander or caraway, in fact, I used caraway in grain free, nut flour based bread to give it a rye bread like flavor (might consider for future reference)
Cumin is something I have to use in moderation to this day, if I am sick or after a reaction, I have to remove it. (This is just me you might be fine with it)
OK potatoes are a nightshade and should be off your list, go with sweet potatoes instead.
Oregano, basil, marjoram, thyme, parsley and rosemary SHOULD be safe and think of this, these are the BASE for Italian seasonings, You can really do quite a bit with this. French Herb soups are another route here. IF lost look at what you can have and try sheet pan meals with these herbs minced over the top. House will smell wonderful, bonus line the sheet pan with parchment paper or foil so no CC and easy cleanup. 

Keep a food diary and find your list of what you can have. Everyone is different, your food issues will evolve with time, some go away some stay, and random ones will crop up. Try rotating your diet, to prevent new ones, like remove something for a week even if you are fine with it.
https://www.wikihow.com/Keep-a-Food-Diary
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

[squirmingitch]

First off, let's see if we can call Ennis @Ennis_TX back to tell you how to trial new foods b/c he's got that down pat. I think it's something like have the same food item 3 days in the week.... I don't know for sure so we'll get him to lay it out. At some point in time it may take a little longer to tell as your system calms down as far as the dh is concerned. I find that I have to have the food several times & over a 2 week period. 

Something I want to mention here too is that our reactions can & do change over time. Yeah, just what you wanted to hear right? Might as well give it to you straight though. Yes, it's just 1 more thing to screw with your head in this whole process. IOW, it isn't as reliable as chemistry. Right now, for me, if I were to get cc'd, my first sign would be belching like a sailor - not dh. Another of the 1st signs for me now is a tic or twitch of my right lower eyelid. These were things I had before & actually before the dh ever reared it's ugly head.

I bet you don't use sugar but I love my sweet tea & so I did use sugar. I also did coffee - instant. I know! I can see your lip curling over that one.  I was always a coffee aficionado but when I had to start cooking everything that goes in my mouth, I didn't want to mess with brewing coffee & cleaning the coffeemaker all the time. Hey, you get used to it. LOL! A warning --- the gluten-free supplemental formulas i.e.: Boost & such --- forget it! Every last one of them has carrageenan in it. I can't stand Gatorade so did not do that. Fruit drinks are too sweet for me so my liquids are coffee, tea, milk & water. Alaskaguy, can you get hold of fresh caught fresh water fish? You could eat that b/c it's not fish from the salt water. I used salt & pepper.

OK, for spices & herbs, yes, I think you pretty much have the right of it. I absolutely think it would be fine for you to use your nutmeg. The seeds are maybe questionable I think. Cumin, caraway & coriander are pretty tiny. If you think you can find a way to at least rinse them & dry them then go for it. The nutmeg you can wash, dry & then grind. The little seeds present a dilemma. Do you have herbs that you picked & dried? Or do you have access to fresh herbs you can use or get enough to dry for later use? You're a resourceful guy, can you think of any wild herbs you can gather? I know, it's winter, but spring is coming. Maybe you could gather some things from the wild. Buy some plants & grow your herbs. As far as re-introducing spices, I don't think you would have to do each individual one at a time. Assuming you have a favored brand, then as long as one works for you then the odds are great that they will all work for you. 

4 hours ago, Alaskaguy said:

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!

 

No. If a food doesn't work then you know it doesn't work. Wait a week & try something else. You don't have to go back to ground zero. 

[Alaskaguy]

8 minutes ago, Ennis_TX said:

Assume your damaged gut is carpet burned on the inside, you do not want to put spices, vinegar, or anything that might irritate it.
Paprika, Chili powder, cayenne, etc. are Nightshades and should be doubly avoided for awhile
Nutmeg, I would be hesitant, back when I was young and stupid we used it as a drug, 6 hour delay but a 12-24 hour high. 
I never had issues with coriander or caraway, in fact, I used caraway in grain free, nut flour based bread to give it a rye bread like flavor (might consider for future reference)
Cumin is something I have to use in moderation to this day, if I am sick or after a reaction, I have to remove it.
OK potatoes are a nightshade and should be off your list, go with sweet potatoes instead.
Oregano, basil, marjoram, thyme, parsley and rosemary SHOULD be safe and think of this, these are the BASE for Italian seasonings, You can really do quite a bit with this. French Herb soups are another route here. IF lost look at what you can have and try sheet pan meals with these herbs minced over the top. House will smell wonderful, bonus line the sheet pan with parchment paper or foil so no CC and easy cleanup. 

Keep a food diary and find your list of what you can have. 
https://www.wikihow.com/Keep-a-Food-Diary

Thank for all those suggestions, Ennis!

Although I think that as of now my problems lie entirely with my skin and the DH (the gut healed within one month after going gluten-free last year, at least by the resolution of my relatively mild but life-long symptoms --- see the recent "Dapsone" thread here), I am exceedingly reluctant to use any kind of flavorings or spices that are not pure and whole.  So I've just been assuming that anything that I have that was purchased pre-ground ---- cinnamon, cloves, paprika, etc. --- I should just steer clear of on the Fasano Diet.  And while I am tempted to consider using some of the seeds like dill and cumin and coriander, I think I will stay clear of those as well.

That leaves me salt, black pepper, and nutmeg (I do know about the potentially dangerous aspects of using too much nutmeg, and no, I will NOT go there!).   I actually have nutmegs in the shell, from which you have to crack out the nutmeg "seed" from inside a shell that is like a pecan shell, so I think I am pretty safe there.  And nutmeg is so good with sweet potatoes!

Then, of course, there is fresh onions, garlic and ginger --- I plan to use those a lot.  I also have lots of dried wild mushrooms which I picked and dried myself.  I guess that'll have to do it for a while.

[squirmingitch]

You know, you would be surprised how your palate can adapt to food without a lot of herbs & spices. Honest! I never would have believed I would be saying this but I am thoroughly enjoying just tasting vegetables like Mother Nature made them. 

[Alaskaguy]

48 minutes ago, squirmingitch said:

Something I want to mention here too is that our reactions can & do change over time. Yeah, just what you wanted to hear right? Might as well give it to you straight though. Yes, it's just 1 more thing to screw with your head in this whole process. IOW, it isn't as reliable as chemistry. Right now, for me, if I were to get cc'd, my first sign would be belching like a sailor - not dh. Another of the 1st signs for me now is a tic or twitch of my right lower eyelid. These were things I had before & actually before the dh ever reared it's ugly head. 

OK, that is something that I would not have expected, so thanks for warning me and letting me know that in advance.  So far, my only initial symptoms (of the DH) is when a patch of skin starts to itch.  But I'll keep in mind that that could very well change.

48 minutes ago, squirmingitch said:

I bet you don't use sugar but I love my sweet tea & so I did use sugar. I also did coffee - instant. I know! I can see your lip curling over that one.  I was always a coffee aficionado but when I had to start cooking everything that goes in my mouth, I didn't want to mess with brewing coffee & cleaning the coffeemaker all the time. Hey, you get used to it. LOL! A warning --- the gluten-free supplemental formulas i.e.: Boost & such --- forget it! Every last one of them has carrageenan in it. I can't stand Gatorade so did not do that. Fruit drinks are too sweet for me so my liquids are coffee, tea, milk & water. Alaskaguy, can you get hold of fresh caught fresh water fish? You could eat that b/c it's not fish from the salt water. I used salt & pepper.

Well, I do use sugar, but only modestly, and mostly just for my morning (plain) green tea --- which is nothing like southern sweet tea.

I have already used a 100% concord grape juice (unreconstituted, even!) from Costco which I called and checked about, but I am diluting it to maybe 1/3 with water, as it is rather too sweet for me to drink straight.

I've never been into Gatorade or those kind of drinks, nor Boost or Ensure --- I'd have thought they'd be automatically off the list, being as processed as they are (I was hesitant even about the 100% concord grape juice).

Unfortunately, here in this part of Alaska we have no significant amount of freshwater fish, at least none that are commercially caught or sold.  There are small graylings and trout in some of the local lakes, but the fishing pressure on them in this area is very heavy, so they never get very large anyway.  And right now, going for them would involve ice fishing, on increasingly questionable ice.

48 minutes ago, squirmingitch said:

Do you have herbs that you picked & dried? Or do you have access to fresh herbs you can use or get enough to dry for later use? You're a resourceful guy, can you think of any wild herbs you can gather?

Ironically, I do have a modest amount of bee balm that I grew and dried last year --- it tastes a lot like a pre-mixed Italian seasoning, like a mixture of sage, oregano and thyme.  But that'll go quickly, as it was my first year growing it, so I didn't want to pick too much while it was still getting established (and the slugs attacked it, too).  I do have one other wild 'spice' that I gather and use, sweet gale nutlets, but ironically, it tastes very much like nutmeg.  Well, kind of like nutmeg mixed with pine sap, but in a nice way.

The bee balm should come back much larger and more robust this year, though, so at least there is that.  It's a great herb!  It's the same plant that is used to flavor Earl Grey tea (which ironically I can't stand), but the version I am growing has more of an oregano-thyme-sage combination flavor ---- I chose it for exactly that reason.

I also have two rows of caraway growing in my garden from last year, which should flower and make their seeds this year, but probably won't be ready to use until later in the summer.

[Posterboy]

3 hours ago, cyclinglady said:

Most members who are no longer active on the forum and leading normal, healthy lives.  The few active old timers are here to help new members.  Not everyone remains ill.  Think about that.  

Alaskaguy,

Cyclinglady makes a good point.

I actually surprised nobody has brought up this thread  ...it is one of the best on this forum on DH.

https://www.celiac.com/forums/topic/115445-relief-and-it-isnt-dapsone/page/2/

I am one of those hanger-ons I.e. old timers ...  I have reduced my time slowly . ...then see others I still can help (hopefully). ..I did not have DH but have had almost every other GI symptom you mentioned.

I am going to provide you some research that helped me. ..I found treating my low stomach acid helped many of my symptom's.

I wanted to address . . .your point 4 (I think) it is on another page of the forum . .how to know what else can be causing your triggers.

someone else asked about this . ..if your DH is not horribly scratchy ...it could b Atopic Dermatitis (AD here after) being confused for DH.

See this article about it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369470/

tryamines can be a cause of AD....

being allergy to wheat is enough to trigger AD mimicking DH symptom's.

https://www.ncbi.nlm.nih.gov/pubmed/10782525

as for foods trigger that can trigger AD here is a good article on that topic.

https://www.ncbi.nlm.nih.gov/pubmed/2610332

and here is a good article on foods tyramines are in . .

https://healthyeating.sfgate.com/foods-cannot-low-tyramine-diet-9574.html

AD is 3x more common in celaic's

here is a nice link about AD in celiac disease.

https://atopicdermatitis.net/clinical/celiac-disease-gluten-intolerance/

what I think happens when you get low in stomach acid your body triggers your immune system to react to various proteins.. .and recent research indicates a low pH acid has been shown to change our bodies microvilli (lining our organs) from an anti-inflammatory response to an inflammatory response thus triggering our auto-immune response. but a strong stomach acid seems to turn off our pro-inflammatory response to food proteins.

here is the new research...

https://www.medicalnewstoday.com/articles/321624.php

and if that isn't bad enough common food additives can damage/impair our immune response causing more GI infllammation

https://phys.org/news/2017-02-food-additive-candy-gum-digestive.html

here is old research that ties NO stomach acid to a high prevelance of DH in celiac's.

https://www.ncbi.nlm.nih.gov/pubmed/3992169

I hope this is helpful but it is not medical advice. ..just some of the things that help me!

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[Alaskaguy]

Thank you for all that information and links, Posterboy --- that is a lot to plow through!

I do still try to read up as I can and find out more about celiac disease and DH, particularly inasmuch as I was never officially diagnosed with either --- a fact which I have not tried to hide here.  But everything, and I mean EVERYTHING, about the skin condition I have had for a number of years now, and which was slowly getting worse, matches the appearance and symptoms of DH to a "T" --- the intense itching, becoming more persistent and intense at night (before going gluten-free, anyway), the development and progression of the rashes and vesicles/pustules to scabbing-over even while new ones formed around them, the red/purple discoloration of the associated skin which was very slow to disappear, and above all and most indicative, the bilaterally symmetrical nature of the appearance of the rashes and lesions, which often shocked me in their perfect symmetry on my body (a rash forming on the inside of my upper left arm being simultaneously or very quickly [within minutes] matched by an identical rash forming on the inside of my upper right arm, for example).

Further proof was provided, unexpectedly, when the relatively moderate yet persistent GI symptoms that I had experienced most or all of my life suddenly resolved, and quite quickly too, once I went on the gluten-free diet 13 months ago.  And yet further proof was provided by the significant, if incomplete, alleviation of my skin symptoms after going on the (conventional) gluten-free diet as well.

Also, quite coincidentally, I had a relatively new dentist a couple of years ago who noticed my weak dental enamel, and my dental enamel defects, and who made a casual comment about how it all resembled what he had seen in patients with celiac disease.  At the time, I did not think too much of his comment, but later, upon learning more about celiac disease, it made perfect sense.

[apprehensiveengineer]

3 hours ago, squirmingitch said:

I thought & I thought & I thought and then one day it dawned on me that there might be cc with oats as far as the bread went. I called the company & sure enough.

This was absolutely the breakthrough that helped me get better.

I was sloppy with the GFD in my first year because I didn't know better, and still kept getting sick a lot. I did some research, and complied with what most specialists would agree is a competent GFD for a celiac. I still was getting sick - not as much, but my iron and other blood values were not good. The rash was relentless. It was unspeakably frustrating to feel like I was doing everything right, but was still so messed up.

I didn't think of oat contamination until I ate got a bad batch of corn chips. One of my corn chips was grey, and tasted weird. I called the company (thinking it might have been wheat), and it turns out that my bag was made in a gluten-free facility - on the same line as gluten-free granola/oats. So my weird chip was almost certainly an oat chip. That got me thinking - chances are these chips I've been eating everyday are always a little contaminated with gluten-free oats. I stopped eating them, as well as any other gluten-free product made by a company that does oats.

It made such a huge difference. It is a great worry to me thinking about how many people don't realize this is happening to them. I know for sure that I react to oats because I tested myself with purity protocol oats under the Canadian Celiac Assoc. protocol - I couldn't make it past day 2, and then I was bedridden for about 10 days. That is the same reaction I would have had to drinking a Guinness, so it makes sense that foods CC'd with oats would be problematic. No one wants to acknowledge that this might be a problem because it's unpopular, however. But imagine if there was a type of peanut that was not tolerated by 20% of peanut allergic people... do you think that would be allowed in peanut-free products? Hell no, it wouldn't because society takes peanut allergies seriously, unlike celiac disease. 

[Alaskaguy]

AppEng, that is good to know about your experience with oats, although I will be absolutely crestfallen if it turns out that I cannot handle even the purity protocol oats (which, in my initial enthusiasm, I ordered more than 100 lbs of directly from the grower in Wyoming last year!).  I LOVE the flavor of oats, and all through last spring and summer, oats were my go-to breakfast, as well as my standby flour of choice for things like corn bread and banana bread.  But yes, while my symptoms did overall subside (not disappear) in those first six or seven months on the gluten-free diet, they did noticeably flare-up frequently, and it was largely for that reason that I (mostly) cut out the oats, and also dairy products and teff, back around September of 2018.  And then in the last few months, I have tried using both oats and teff a number of times, and perhaps not coincidentally, my DH has flared-up more and more.

Oh, that is going to suck if I can't have ANY oats!

[apprehensiveengineer]

Just now, Alaskaguy said:

AppEng, that is good to know about your experience with oats, although I will be absolutely crestfallen if it turns out that I cannot handle even the purity protocol oats (which, in my initial enthusiasm, I ordered more than 100 lbs of directly from the grower in Wyoming last year!).  I LOVE the flavor of oats, and all through last spring and summer, oats were my go-to breakfast, as well as my standby flour of choice for things like corn bread and banana bread.  But yes, while my symptoms did overall subside (not disappear) in those first six or seven months on the gluten-free diet, they did noticeably flare-up frequently, and it was largely for that reason that I (mostly) cut out the oats, and also dairy products and teff, back around September of 2018.  And then in the last few months, I have tried using both oats and teff a number of times, and perhaps not coincidentally, my DH has flared-up more and more.

Oh, that is going to suck if I can't have ANY oats!

Lol! I sympathize - I was greatly disappointed myself! 2010-2015, gluten-eating me I ate oats every single day for lunch more or less. They are convenient because you can throw 'em in a container dry, and then find somewhere with hot water (or a tap and microwave) and hey presto! decent, cheap, nutritious meal.

I'd recommend not eating them for a while, see if that changes anything. Then try adding them back in. Purity's the way to go if you can tolerate oats... definitely wouldn't mess with most of the oat-containing gluten-free products on the shelves. In some ways, not being able to eat oats makes things a bit simpler... I don't have to worry about purity/sorted because it's all bad to me. Downside is that almost all companies use oats now, meaning that few can be considered non-CC'd. Kinnikinnick is the only major bread/baked goods brand that explicitly states it doesn't mess with oats. I've also had good luck with more local/regional companies that are celiac-focused - lots of oat skeptics in more celiac-focused circles.

[Ennis-TX]

14 minutes ago, Alaskaguy said:

AppEng, that is good to know about your experience with oats, although I will be absolutely crestfallen if it turns out that I cannot handle even the purity protocol oats (which, in my initial enthusiasm, I ordered more than 100 lbs of directly from the grower in Wyoming last year!).  I LOVE the flavor of oats, and all through last spring and summer, oats were my go-to breakfast, as well as my standby flour of choice for things like corn bread and banana bread.  But yes, while my symptoms did overall subside (not disappear) in those first six or seven months on the gluten-free diet, they did noticeably flare-up frequently, and it was largely for that reason that I (mostly) cut out the oats, and also dairy products and teff, back around September of 2018.  And then in the last few months, I have tried using both oats and teff a number of times, and perhaps not coincidentally, my DH has flared-up more and more.

Oh, that is going to suck if I can't have ANY oats!

I went paleo IE grain, and dairy free. Worked wonders for my other AI diseases. I initially was ordering bread from Julian Bakery or Mikey's. I now make my own coconut and almond bread and sell at farmers markets. I also eat an almost keto/atkins macros, as in low carb no sugars at all. Sorta had to when my UC was flaring to sugars, then had to cut carb when I got glucose spikes to anything. 
>.< I would be at a loss if I had to give up almond or coconut flours, I buy several 25lb cases a year (I can even get you a good rate on the almond flour). PS nut meal porridge is my quick go to, almond flour/almond butter, coconut flour, maybe some protein powder or egg whites or a bit of psyllium husk to thicken it up. I eat this kind of stuff for lunch or dinner often for convenience. I sometimes just take leftover baked goods and blend into a porridge. 

[squirmingitch]

Oh Monarda! I didn't think of it as Bergamot. I have some & I adore the aroma every time I brush past it or water it. Smells like heaven! Unfortunately, it's in it's 3rd year here (some bright red blooms) & has never bloomed. It doesn't like FL. I do have some native monarda in the fields that the bees & butterflies love. BTW, I love the Earl Grey tea. Hummmm..... I'm going to have to taste mine & see what flavor it is.

My 2 cents say save the oats for last after you've added everything else back in. 

[ch88]

If eat the wrong foods I tend to get mental confusion and anxiety disorder. The foods that work the best seem be just fruit and vegetables along with meat and limited spices. Oats are a trigger for me as well as corn. I don't think this is a cross contamination issue but it is possible. A lot of other grains I am unsure about and it seems to vary. 

My mom doesn't think she is Celiac but has a skin condition. On a very strict AIP diet her skin problems went away. If I remember rightly she noticed lots of improvement within a few weeks. She avoids all gluten and is very careful. I think wheat gives her digestive problems as well but she still thinks she probably isn't Celiac .  Before she had tried a gluten free and casein free diet and she noticed some improvement. I don't know how well she did the diet before.  

This may be controversial but you might consider using msg for as spice. Msg is broken down to sodium and glutimate by the body. I don't think there is any risk in using msg as a seasoning and it tastes really good. https://www.ncbi.nlm.nih.gov/pubmed/28943112

[Alaskaguy]

2 hours ago, apprehensiveengineer said:

I'd recommend not eating them for a while, see if that changes anything. Then try adding them back in. Purity's the way to go if you can tolerate oats... definitely wouldn't mess with most of the oat-containing gluten-free products on the shelves.

Yes, AppEng, I am going to do exactly that going forward --- as of yesterday.  The full Fasano diet, with no grains (aside from rice), no fish, no dairy, no processed foods of any sort.  I sat down this afternoon and managed to come up ten different main dishes that I have made in the past that fit into this Fasano Diet, and I hope to think of more in the next few days.  Tomorrow's dinner is already in the works --- Lemon-Chicken-Rice Soup (no spices or herbs except for black pepper, and a little dried bee balm that I grew myself).

Have you (or anyone else here) tried using teff, or teff flour?  It is a grain, but not related to wheat or rye or barley (or oats) much at all --- much more removed from all those others, botanically speaking.  Nor is it any relative of corn, unlike sorghum and millet.  I have both the flour and the grain here, but I did not get too many chances to experiment with it before giving it up now for the Fasano Diet test.  Still, I could imagine it working for somebody who cannot tolerate oats.

1 hour ago, Ennis_TX said:

 I now make my own coconut and almond bread and sell at farmers markets. I also eat an almost keto/atkins macros, as in low carb no sugars at all. Sorta had to when my UC was flaring to sugars, then had to cut carb when I got glucose spikes to anything. 
 

I would be very curious to know more about those flours and those breads, Ennis!  They sound both very intriguing, and very good.  So I presume that you are able to find a suitably reliable gluten-free, non-cc'ed source for those flours, or do you have to make them yourself?

 

1 hour ago, squirmingitch said:

Oh Monarda! I didn't think of it as Bergamot. I have some & I adore the aroma every time I brush past it or water it. Smells like heaven! Unfortunately, it's in it's 3rd year here (some bright red blooms) & has never bloomed. It doesn't like FL. I do have some native monarda in the fields that the bees & butterflies love. BTW, I love the Earl Grey tea. Hummmm..... I'm going to have to taste mine & see what flavor it is.

My 2 cents say save the oats for last after you've added everything else back in. 

Yes, Squirmingitch, Monarda didyma is what I am growing.  Specifically, the "Panorama" variety (NOT "Panorama Mix", which has many different colors and varieties).  It has bright crimson flowers, or at least it is SUPPOSED to have such flowers --- we'll see this summer!  But you know, as I am growing it for use as a culinary herb and not for its flowers, I would be thrilled if it did NOT ever flower, like yours, as it would probably then be harvestable for culinary use throughout the season, rather than having to be harvested just before blooming.  Since mine did not bloom last year, being new, I just harvested the leaves as the first hard frost was coming on in late September.

Yes, do try your wild Monardas!  But be aware that every species tastes different, and even the same variety grown in a different area can apparently taste different.  I grew this same variety in southern Michigan many years ago, and it had that typical Earl Grey mutant-minty-orangey aroma and flavor that I do not like.  The hummingbirds and bumblebees sure did like it, though.

[apprehensiveengineer]

Teff is fine as long as it is marked gluten-free or in a gluten-free product. It's common in Ethiopian cuisine (used to make a savoury crepe-like thing called injera). Sometimes it is cut with wheat to extend it as teff is expensive (watch out in restaurants serving injera!). Since it's a grass that kind of look similar to wheat and might be processed/packaged on shared lines, it's important to ensure it's labelled gluten-free.

If you're doing the Fasano diet, it's a no. I did the Fasano for a bit (post-oat CC revelation), and it helped. The gluten-free bread I now eat has teff in it as part of its flour mix.

[Alaskaguy]

3 minutes ago, apprehensiveengineer said:

Teff is fine as long as it is marked gluten-free or in a gluten-free product. It's common in Ethiopian cuisine (used to make a savoury crepe-like thing called injera). Sometimes it is cut with wheat to extend it as teff is expensive (watch out in restaurants serving injera!). Since it's a grass that kind of look similar to wheat and might be processed/packaged on shared lines, it's important to ensure it's labelled gluten-free.

If you're doing the Fasano diet, it's a no. I did the Fasano for a bit (post-oat CC revelation), and it helped. The gluten-free bread I now eat has teff in it as part of its flour mix.

AppEng, I was only willing to even consider trying teff because I could, and did, buy it directly from the grower/distributor, Maskal Teff, In Idaho.  And they do test it for gluten, I believe down to the 5ppm level.  Plus, given that whole teff grain is so incredibly tiny (it's almost like sand), there is even less risk of cc from gluten grains like wheat or barley or even oats, as those would be vastly larger than teff, and would get automatically seived out.  So I felt pretty safe trying teff.

Nevertheless, I will be totally giving up the teff while on the Fasano Diet.  And it may be just a coincidence, but in looking back on when I did use teff over the past year, those times seemed to coincide with the worst DH outbreaks I have had while on the (conventional) gluten-free diet.  But for what it's worth, I have had extensive communications with the owner of Maskal Teff, Elisabeth Carlson, and she tells me that they have had many celiac patients purchase and use their teff over the years, with no adverse celiac disease-related reactions ever reported from any of them.  Teff is botanically much more distantly related to the gluten grains than is oats, and I would be highly surprised to find out that it, by itself (with no cross contamination), had caused anyone any celiac disease-related symptoms.