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Moggy

Empathy!

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Im a super sensitive celiac.

No I cannot use gluten filled creams, hair products, beauty products. The layer of gluten left by them gets on hands and in my mouth. Its enough to cause me symptoms.

Great if other celiac people can use them without problems. I know gluten cant penetrate skin. I cannot.

I react to  anything over 5ppm. 20ppm is LOW gluten, not free of it, and it hurts me.

I reserve the right to whine and complain and cry when my diet is restricted and I still get sick.

My symptoms are pretty awful. Foaming liquid diarrhea, sometime bloody, agonising cramps, vomiting. Tiredness so bad I just go to sleep in the middle of the day, brain fog. Then the dh.

i am allergic to sulpha drugs. No dapsone. It is truly torture, my husband said the rash glows, it makes me burn and itch so bad. And it scars. Cold water helps. Cbd helps. But its ruining my life.

I cant ever eat out, or at some elses house. I react to such small amounts. I have to think before kissing my husband, or holding my kids hand. I had 3 miscarriages. 

Celiac disease is awful and life restricting for those of us who react to tiny amounts. Is empathy from less reactive or non reactive people too much to hope for?

 

 

 

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49 minutes ago, Moggy said:

Im a super sensitive celiac.

No I cannot use gluten filled creams, hair products, beauty products. The layer of gluten left by them gets on hands and in my mouth. Its enough to cause me symptoms.

Great if other celiac people can use them without problems. I know gluten cant penetrate skin. I cannot.

I react to  anything over 5ppm. 20ppm is LOW gluten, not free of it, and it hurts me.

I reserve the right to whine and complain and cry when my diet is restricted and I still get sick.

My symptoms are pretty awful. Foaming liquid diarrhea, sometime bloody, agonising cramps, vomiting. Tiredness so bad I just go to sleep in the middle of the day, brain fog. Then the dh.

i am allergic to sulpha drugs. No dapsone. It is truly torture, my husband said the rash glows, it makes me burn and itch so bad. And it scars. Cold water helps. Cbd helps. But its ruining my life.

I cant ever eat out, or at some elses house. I react to such small amounts. I have to think before kissing my husband, or holding my kids hand. I had 3 miscarriages. 

Celiac disease is awful and life restricting for those of us who react to tiny amounts. Is empathy from less reactive or non reactive people too much to hope for?

 

 

 

Unfortunately most people do not get it....if they have not experienced it themselves. I often see post even gluten free talk about things that mess with me...and it is like salt in a wound....I get it can be frustrating. I have had reactions to "gluten free" hemp protein....nima flagged it, sent to a lab was like 16ppm....they say well the FDA says under 20ppm is gluten free.....yeah sure....I was eating it for a week before the side effects hit and took over a month to go away..I am still having cascading issues from those exposures...but alas the industry does not care. I have friends who have been there and comforted me, and I vent and talk about my frustrations often.
I sometimes tend to think of non existent technology in joking manners to make me smile...like a glucose like monitor for checking antibodies, star trek food replicators to make meal minus the gluten proteins or things that make me sick.....or a gluten exposure simulation pill....to give to those ass hats that find me getting sick funny (I have had co workers at places purposely expose me in the past).
Take life as it comes...remember it could always be worse and be thankful for what we have, and there are people here who can relate to you on different levels your not alone.

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Thanks, Ennis.

Im going to try the keto paleo diet, I really cant feel this unwell.

Ild like a star trek gluten free food replicator. Or a time machine to when I wasnt sick. 

Ild settle for not being made to feel guilty for having to be so careful with gluten. 

Those people who glutened you for a so called joke should be charged with assault.

 

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Moggy, I get it. I am super sensitive. I also have dh. I have been gluten free for 6 years as of this past December. I can't say for absolute certain that I was always this sensitive or if I became this sensitive somewhere along the line. At any rate, I ended up being put on the Fasano diet. I was down to 86 lbs.

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

I was on that for a year. My rash quit. Completely. Gone. Done. Not an itch, not a scratch, not a burn. Heaven! I did find that even on that diet, I could not drink Gatorade or the rash would come back along with other symptoms. I did however drink instant coffee - Nescafe' if you're interested. For a while, I had intolerance to peanuts but that was an intolerance & not celiac. The peanut intolerance is now gone. I stayed off them for 6 months & then tried them & was okay again. I can not eat rice, brown or white although I have not trued rice in a year. I am slowly trying foods, one at a time, but it truly is slow going & when you try something & react, then you have to wait until your immune system calms down before you try to move forward again. It's an agonizingly slow process. I still eat no canned or frozen or dried fruits & veggies with the exception of dried beans. I make a lot of refried beans to keep me going -- I do need the carbs. I can't have palm oil - food intolerance. I can't tolerate any gluten at all it seems. This is what I have been able to add beyond the Fasano diet.

This brand of almond flour

https://barneybutter.com/shop/almond-flour/

Smuckers Natural Peanut Butter

That's it. That's all. I recently tried coconut flour. This one:

https://www.luckyvitamin.com/p-435061-nutiva-organic-superfood-unrefined-coconut-flour-1-lb?LanguageCode=EN&locale=en-US&utm_source=google&utm_medium=PLA&scid=scplp127815&sc_intid=127815&utmp_campaign=SC_Shopping_Campaign_CS25_Brand&branded=yes&gclid=Cj0KCQjw4_zVBRDVARIsAFNI9eBGOARZdKfCdYfhOCEIuP0EP-Vj2Hn6P6HVoy8Ozv5khSKQBr4kuE0aAnJ1EALw_wcB

I got dh blisters.:ph34r:

Back to the drawing board!

So yes, I do know how frustrated you are. I know how discouraging it is. I think perhaps you should try the Fasano diet yourself. 

I have been able to make myself some "bread" with the almond flour:

https://comfybelly.com/2013/08/sandwich-rounds-using-almond-flour/#.WSi668aB3JN

I developed a recipe for banana bread using the almond flour. I will be happy to share it -- just pm me.

So I eat those 2 "breads" and peanut butter on either of them as well as on whole bananas or apple slices. It has helped me to put some weight back on. 94 lbs. now - FINALLY! It took 1.5 years to get up to 94 from 86. 

 

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1 hour ago, squirmingitch said:

Moggy, I get it. I am super sensitive. I also have dh. I have been gluten free for 6 years as of this past December. I can't say for absolute certain that I was always this sensitive or if I became this sensitive somewhere along the line. At any rate, I ended up being put on the Fasano diet. I was down to 86 lbs.

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

I was on that for a year. My rash quit. Completely. Gone. Done. Not an itch, not a scratch, not a burn. Heaven! I did find that even on that diet, I could not drink Gatorade or the rash would come back along with other symptoms. I did however drink instant coffee - Nescafe' if you're interested. For a while, I had intolerance to peanuts but that was an intolerance & not celiac. The peanut intolerance is now gone. I stayed off them for 6 months & then tried them & was okay again. I can not eat rice, brown or white although I have not trued rice in a year. I am slowly trying foods, one at a time, but it truly is slow going & when you try something & react, then you have to wait until your immune system calms down before you try to move forward again. It's an agonizingly slow process. I still eat no canned or frozen or dried fruits & veggies with the exception of dried beans. I make a lot of refried beans to keep me going -- I do need the carbs. I can't have palm oil - food intolerance. I can't tolerate any gluten at all it seems. This is what I have been able to add beyond the Fasano diet.

This brand of almond flour

https://barneybutter.com/shop/almond-flour/

Smuckers Natural Peanut Butter

That's it. That's all. I recently tried coconut flour. This one:

https://www.luckyvitamin.com/p-435061-nutiva-organic-superfood-unrefined-coconut-flour-1-lb?LanguageCode=EN&locale=en-US&utm_source=google&utm_medium=PLA&scid=scplp127815&sc_intid=127815&utmp_campaign=SC_Shopping_Campaign_CS25_Brand&branded=yes&gclid=Cj0KCQjw4_zVBRDVARIsAFNI9eBGOARZdKfCdYfhOCEIuP0EP-Vj2Hn6P6HVoy8Ozv5khSKQBr4kuE0aAnJ1EALw_wcB

I got dh blisters.:ph34r:

Back to the drawing board!

So yes, I do know how frustrated you are. I know how discouraging it is. I think perhaps you should try the Fasano diet yourself. 

I have been able to make myself some "bread" with the almond flour:

https://comfybelly.com/2013/08/sandwich-rounds-using-almond-flour/#.WSi668aB3JN

I developed a recipe for banana bread using the almond flour. I will be happy to share it -- just pm me.

So I eat those 2 "breads" and peanut butter on either of them as well as on whole bananas or apple slices. It has helped me to put some weight back on. 94 lbs. now - FINALLY! It took 1.5 years to get up to 94 from 86. 

 

OH SHITE, that flour triggered your DH?! I use it all the time......I been thinking my UC has been flaring as my numbness is not present, the fog is not present, and the anxiety/looping thoughts are not present, but I have D every other day for the past 2 months. Will Nima test it in the morning....I sure as hell hope not I just turned out my baking mixes and blends for the first few months of the market pre mixing my flours.....that would break me for the entire market/year........like ruin me. On a side note GIRL check out my ricotta scones I just made up a batch this morning with almond flour.





 

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Ennis, I truly don't want people thinking that coconut flour is going to gluten them! It is certified gluten free & I don't doubt that. I am positive that the vast majority of celiacs can eat that as well as they can eat anything else certified gluten free so I don't want to scare off your "average" celiac from using that flour. It's just that I reacted with dh blisters from eating it. 

I just looked up your ricotta scones recipe. Yum! Sounds great! I will have to forego the lemon extract just yet but I bet I can sub some lemon juice. I know it won't be the same but beggars can't be choosy right? I mean, even if they were just plain scones, they sound great. Thanks!

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If it makes you feel any better, a recent study indicates that you are probably not crazy:

https://academic.oup.com/ajcn/article/107/2/201/4911450

If you don't have time to read the whole thing, basically the "average" compliant celiac accidentally consumes >200ish mg of gluten in a day. The recommended max (to avoid significant intestinal damage, cancer risk etc.) is 10 mg per day. Kind of surprised no one has posted this article... but then again, it's easier to bury your head in the sand than to perhaps consider that what you already find difficult/restricting may not be entirely adequate.

I'm betting that >200 mg adds up from small exposures in poorly controlled shared kitchens, occupational exposures, large quantities of gluten-free foods near 20 ppm, personal care products that you aren't supposed to eat  etc. Those with only intestinal symptoms (or perhaps no symptoms) rely largely on imperfect diagnostic tools (endoscopy, bloodwork) to assess how well they are doing periodically - those with DH just need to strip naked and take a look in the mirror and can do so every single day.

Anyways, I agree it sucks to be gaslighted by fellow celiacs and doctors on the issues that you described. Scientific evidence in the area of practical lifestyle decision choices for celiac disease is limited, and I think more people need to remember that when they make definitive statements.

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9 hours ago, squirmingitch said:

Ennis, I truly don't want people thinking that coconut flour is going to gluten them! It is certified gluten free & I don't doubt that. I am positive that the vast majority of celiacs can eat that as well as they can eat anything else certified gluten free so I don't want to scare off your "average" celiac from using that flour. It's just that I reacted with dh blisters from eating it. 

I just looked up your ricotta scones recipe. Yum! Sounds great! I will have to forego the lemon extract just yet but I bet I can sub some lemon juice. I know it won't be the same but beggars can't be choosy right? I mean, even if they were just plain scones, they sound great. Thanks!

TESTED it my bake mixes and my coconut flour all came back gluten free, to be extra sure, I left the test alone and checked it 2 hours later after the first time and it still read the same (sometimes even the tiniest traces are present the line will appear hours later indicating something might be below 20ppm but still have some in it) Double sure even the over critical NIMA gave it a smile.

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I am glad to hear that Ennis

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11 hours ago, apprehensiveengineer said:

If it makes you feel any better, a recent study indicates that you are probably not crazy:

https://academic.oup.com/ajcn/article/107/2/201/4911450

If you don't have time to read the whole thing, basically the "average" compliant celiac accidentally consumes >200ish mg of gluten in a day. The recommended max (to avoid significant intestinal damage, cancer risk etc.) is 10 mg per day. Kind of surprised no one has posted this article... but then again, it's easier to bury your head in the sand than to perhaps consider that what you already find difficult/restricting may not be entirely adequate.

I'm betting that >200 mg adds up from small exposures in poorly controlled shared kitchens, occupational exposures, large quantities of gluten-free foods near 20 ppm, personal care products that you aren't supposed to eat  etc. Those with only intestinal symptoms (or perhaps no symptoms) rely largely on imperfect diagnostic tools (endoscopy, bloodwork) to assess how well they are doing periodically - those with DH just need to strip naked and take a look in the mirror and can do so every single day.

Anyways, I agree it sucks to be gaslighted by fellow celiacs and doctors on the issues that you described. Scientific evidence in the area of practical lifestyle decision choices for celiac disease is limited, and I think more people need to remember that when they make definitive statements.

Celiac.com does have this article on file located under “Publications and Publicity” issued February  26, 2018.   I have mentioned it in a few posts (referenced The Gluten Free Watchdog site which lists this article), but those get buried.  

Go to the topic and let’s talk about it.  Add your previous comments.  The Gluten Free Watchdog is definitely concerned about this!  

 

Edited by cyclinglady

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Oh my gosh guys! I was feeling so disheartened and defeated by the whole thing. Like im punished and ridiculed for something I cant help. Thanks to you all ive found a bit of fight. 

Ive only burners and a microwave,so I cant bake, and cant afford expensive ingredients, so things are going to get boring food wise, but im going to try harder to go grain free. 

The symptoms are ruining my life. Im so anemic and tired and itchy. My stomach hurts. I only ate steamed veg and egg yesterday. I dont seem worse at least.

 

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Thanks Cyclinglady! Yes, we DO need a discussion on this. Great idea for it to have its own thread too.

Moggy, Can you afford something like this? Do you have the space for it?

https://www.walmart.com/ip/Cuisinart-Deluxe-Convection-Toaster-Oven-Broiler-TOB-135N-Stainless-Steel/55464716?wmlspartner=wlpa&selectedSellerId=8154&adid=22222222227068975696&wmlspartner=wmtlabs&wl0=&wl1=g&wl2=c&wl3=175400300050&wl4=pla-280591254843&wl5=9011379&wl6=&wl7=&wl8=&wl9=pla&wl10=115068443&wl11=online&wl12=55464716&wl13=&veh=sem

Also, I can't believe I forgot this but better late than never. Do you have a dermatologist OR just a PCP? Get one or the other to prescribe Fluocinonide 0.05% cream. It really is the best thing I've found for the rash. Sort of kick's the rash's butt at least as far as itching goes. It's expensive -- my pharmacy is above average as far as costs go but it cost me $45 but it's a big tube -- 60gm or 2.2oz & a teeny bit goes a long way.

At some point in time, you will find a good hot Epsom salt soak helps a lot but you have to get to that point so try it & if it doesn't work then wait a month or two & try again. 

I do a lot of veggies in the nuker. One of our favs is broccoli florets & yellow squash slices sprinkled with pepper & if you can do butter then just slices of butter & NO water. Put the lid on, & nuke for 4 or 5 minuets. Done! Do the same with cauliflower & zucchini. You can throw in cherry maters or anything else that suits your fancy at the time.

Make your own refried beans. So easy! Take dried pinto beans, sort & wash them real well. Then cook per the package. Make sure at the end they don't have too much water in them. You can always add more water but it's hard to take away, right? Salt & pepper & olive oil (or canola) & use a potato masher if you don't have a stick blender (LOVE my stick blender -- best investment I ever made!) use LOTS of oil & mash & smash tasting along the way. You can have them lumpy or you can have them pureed -- it all depends on how you like them. You do NOT have to fry them. They're just mashed beans. If you have a freezer, they freeze real well in serving sized containers. I like to have them for breakfast by thawing a container & dumping them in a small glass dish, nuke till hot, then crack an egg on top, (poke the yolk!) then nuke until the white is cooked. YUM! Quick & easy & not boring.

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@cyclinglady Good to know - must have missed it! I saw the article when it first came out, posted on GFWD's twitter. Can't say I'm particularly surprised, given the lack of definitive instruction on many topics relating to the GFD.

It would be very interesting if a follow-up study could be done where the effect of different lifestyle choices (eg. eating out, eating 'may contain' foods etc.) were made. This would certainly provide a basis for more specific instructions beyond "don't eat gluten," which is all I got.

@Moggy - I am quite low income (grad student) and manage to do ok food-wise. All I have in my kitchen is a stove top, hand blender, coffee grinder and a kettle. I make my own flour (for pancakes and thickening) and grits using rice in my coffee grinder. I mostly just eat fresh meat, fresh produce, rice, and dried beans, all of which are inexpensive. I splurge a bit on chocolate, peanut butter, and coffee (whole bean). I make a lot of one pot stews, chili, soups and curry. I usually cook in big batches in a large stock pot, so that I only cook 2-3x per week and eat that same meal for lunch and dinner. A crock pot would work well too if you can afford one.

I follow a low iodine diet, which has helped tremendously with the rash. You can google the details, but basically you limit seafood, fish, dairy, and iodized salt. It's not a forever thing, just until you've shed the antibodies from your skin. I found the results to be quite quick (within a few days), so perhaps consider trying this to see if it helps.

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Here's the link for a low iodine diet. Leave off the gluten of course.

http://www.thyca.org/pap-fol/lowiodinediet/

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I made a big pot of gluten-free vegetarian chilli. All gluten-free ingredients, not too hot and my tummy just couldn't handle it. 

Im going to force myself to go on the fasano diet. Tea and chocolate (the endangered species bars and stash tea), as my only cheats. Go low iodine.

I have to fix this! It upsets my family to see me go without nice food, but ikd rather live on steamd veg and eggs than feel this bad. 

 

 

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8 minutes ago, Moggy said:

I made a big pot of gluten-free vegetarian chilli. All gluten-free ingredients, not too hot and my tummy just couldn't handle it. 

Im going to force myself to go on the fasano diet. Tea and chocolate (the endangered species bars and stash tea), as my only cheats. Go low iodine.

I have to fix this! It upsets my family to see me go without nice food, but ikd rather live on steamd veg and eggs than feel this bad. 

 

 

Yeah I can not handle the harsness of something as heavy as chili...vegan even. I might have a spoon of it when I fix it for others but nothing more.
Eggs, and veggies, scrambles, stir fries, tiny bit of seasoning on one part of it....been my go to...last month has been mostly blending steamed veggies, coconut flour, and seed meals, into egg then cooking into mushy quiche or scrambles....sometimes with avocado or nut butters on them. Light seasonings on a few bites for the enjoyment. This mornings was funny, egg whites, coconut milk, coconut flour, sunbutter, ground flax seed, and nestle cocoa with stevia let it sit over night blended it up in the morning and made a skillet baked chocolate egg quiche for national chocolate mousse day. Side of blended kale and coconut amino soup for my veggies.

Play it safe, eat what you have to, enjoy life with the little treats sometimes, I use Lakanto sugar free chocolate bars, and Crio Bru cocoa nibs for chocolate treats with each meal. Good fats, no dairy, soy, sugar, crap. I hear you on teas....I could not handle black teas, and turned to various green and herb teas for Republic of Tea...their teas are all gluten-free certified.

Me and coffee are fighting right now...I had to go decaf half a year ago....now I am having issues with those being a bit too harsh if i drink 2+ cups = D....I swear....I might kill someone without my morning coffee....but the daily D after drinking it (no gluten symptoms just UC flare D) is making me consider testing my limits of dealing with other humans without the morning joe for a few weeks til the gut stops throwing the tantrums. ..... months of denial....blaming other things...one point even hoping it was gluten....but like clock work 2-3 hours after starting my coffee drinking there we go.

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Hi Ennis, I was glad to read your flour mixes were uncontaminated.

I gave up coffee as it got me too, I cannot give up tea. The stash ones are certified, ive never seen republic of tea for sale. 

Funny breakfasts are normality now. Season brand gluten-free canned sardines, a banana, baked sweet potato. I miss oatmeal. 

I do great on eggs, steamed veg, chia seeds, a little fresh ginger. No onions, garlic or spices apart from black pepper and salt. As much fruit as I can afford. I dont seem to tolerate gluten-free soy sauce. 

I never enjoy food now. 

I hate meat, and I can feed the family healthier without it. Lots of stew and lentil soup. Though me and lentils don't agree. Or beans. 

I cannot put the kids on a gluten-free diet, or my long suffering husband. He prepares all gluteny meals, no shared pans etc. 

The rice I was eating a lot of was only gluten-free to 20ppm! Rice!

 

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Moggy dear, the lentils!!!!!! The LENTILS!!!!!!! Beware the lentils!!!! IMHO don't EVER do lentils unless YOU PERSONALLY have carefully, carefully sorted & washed them & cooked them. Gluten Free Watchdog has been made aware of & tested so many lentils that were contaminated with wheat & these are dried lentils we're talking about. Personally, I won't touch lentils no matter what as they are grown & contaminated so much with wheat. 

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4 hours ago, Moggy said:

I made a big pot of gluten-free vegetarian chilli. All gluten-free ingredients, not too hot and my tummy just couldn't handle it. 

Im going to force myself to go on the fasano diet. Tea and chocolate (the endangered species bars and stash tea), as my only cheats. Go low iodine.

I have to fix this! It upsets my family to see me go without nice food, but ikd rather live on steamd veg and eggs than feel this bad. 

 

 

I am so sorry that you could not enjoy your chili!  I make it as well for my family, but I can not tolerate the peppers, onions, garlic either!   Five years in and these intolerances have not resolved.   Ugh!   Hubby is gluten free and my kid is too while at home (I send her off with a gluten sandwich that she assembles herself at school).  

Do not feel bad about serving your family plain food.  You are all in this together!  We did not go gluten free completely until I was diagnosed.  I was pretty careful for a decade preparing gluten meals for me and my daughter and gluten-free for hubby, but my he told me that he felt best when I gave up gluten and made the entire house gluten free.  Even extended family is not allowed to bring gluten into the house.  Our health is worth it.  

Please make sure you sort your beans and wash them well.  I have found wheat in my beans, but more often I find tiny rocks (you could break a tooth on them).  

Before you swear off rice (it is possible that you have an intolerance to it), consider a brand that is grown in California.  The odds of it being near a wheat field is slim and none.  Be sure it is washed three times.  The California (short grain, sticky Japanese-American) rice should contain less arsenic too.  

I found that I have done better without any grains or beans/legumes.  Why?  One, I am diabetic and I would rather carb out on ice cream (that milk intolerance resolved) than beans, but I just felt better without them.  I do indulge in them occasionally  and have not had any issues, but my gut has healed (confirmed by repeat endoscopy), so that has a lot to do with it.  

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On ‎3‎/‎31‎/‎2018 at 7:32 PM, squirmingitch said:

Moggy, I get it. I am super sensitive. I also have dh. I have been gluten free for 6 years as of this past December. I can't say for absolute certain that I was always this sensitive or if I became this sensitive somewhere along the line. At any rate, I ended up being put on the Fasano diet. I was down to 86 lbs.

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

I was on that for a year. My rash quit. Completely. Gone. Done. Not an itch, not a scratch, not a burn. Heaven! I did find that even on that diet, I could not drink Gatorade or the rash would come back along with other symptoms. I did however drink instant coffee - Nescafe' if you're interested. For a while, I had intolerance to peanuts but that was an intolerance & not celiac. The peanut intolerance is now gone. I stayed off them for 6 months & then tried them & was okay again. I can not eat rice, brown or white although I have not trued rice in a year. I am slowly trying foods, one at a time, but it truly is slow going & when you try something & react, then you have to wait until your immune system calms down before you try to move forward again. It's an agonizingly slow process. I still eat no canned or frozen or dried fruits & veggies with the exception of dried beans. I make a lot of refried beans to keep me going -- I do need the carbs. I can't have palm oil - food intolerance. I can't tolerate any gluten at all it seems. This is what I have been able to add beyond the Fasano diet.

This brand of almond flour

https://barneybutter.com/shop/almond-flour/

Smuckers Natural Peanut Butter

That's it. That's all. I recently tried coconut flour. This one:

https://www.luckyvitamin.com/p-435061-nutiva-organic-superfood-unrefined-coconut-flour-1-lb?LanguageCode=EN&locale=en-US&utm_source=google&utm_medium=PLA&scid=scplp127815&sc_intid=127815&utmp_campaign=SC_Shopping_Campaign_CS25_Brand&branded=yes&gclid=Cj0KCQjw4_zVBRDVARIsAFNI9eBGOARZdKfCdYfhOCEIuP0EP-Vj2Hn6P6HVoy8Ozv5khSKQBr4kuE0aAnJ1EALw_wcB

I got dh blisters.:ph34r:

Back to the drawing board!

So yes, I do know how frustrated you are. I know how discouraging it is. I think perhaps you should try the Fasano diet yourself. 

I have been able to make myself some "bread" with the almond flour:

https://comfybelly.com/2013/08/sandwich-rounds-using-almond-flour/#.WSi668aB3JN

I developed a recipe for banana bread using the almond flour. I will be happy to share it -- just pm me.

So I eat those 2 "breads" and peanut butter on either of them as well as on whole bananas or apple slices. It has helped me to put some weight back on. 94 lbs. now - FINALLY! It took 1.5 years to get up to 94 from 86. 

 

Goya has an organic line of beans that are gluten free ( can).  You may want to try Edison Grainery Organic Beans for dry beans.  They are certified Gluten free an boast a less than 5ppm.  You can order them from thrive market on line.  There is also Earthly Choice for dry beans ( lentils) certified organic sold in Publix.  Also the most delicious snacks: Gummy bears- Annie Organics and Simple Mills has the most amazing chocolate chip and pecan cookies.  They are amazing!!!  I could not believe they were grain free ( no wheat no soy and no corn all of my allergies were covered in one box) .  I have seizures from grain so I take it very seriously and other complications from years of not knowing I had this disease. Simple Mills also has crackers....I love them with soup...with my dips....These products make me feel a little human.  Also I just found KNOW products which are all grain free pasta....

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9 minutes ago, Karen Davis said:

Goya has an organic line of beans that are gluten free ( can).  You may want to try Edison Grainery Organic Beans for dry beans.  They are certified Gluten free an boast a less than 5ppm.  You can order them from thrive market on line.  There is also Earthly Choice for dry beans ( lentils) certified organic sold in Publix.  Also the most delicious snacks: Gummy bears- Annie Organics and Simple Mills has the most amazing chocolate chip and pecan cookies.  They are amazing!!!  I could not believe they were grain free ( no wheat no soy and no corn all of my allergies were covered in one box) .  I have seizures from grain so I take it very seriously and other complications from years of not knowing I had this disease. Simple Mills also has crackers....I love them with soup...with my dips....These products make me feel a little human.  Also I just found KNOW products which are all grain free pasta....

There have been many issues with edison as of late....GFWD has been doing follow ups but they keep having wheat and other foreign grains end up in their lentils and beans.
You might want to look at this I cover many suggestions on things and have quite a few listed as grain free options...
OH if you miss pizza Check out the Califlour Foods Plant based one dang life safer.
https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

 

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