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Grinding your own wheat with a celiacs child? Help me think through this...


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I am a wheat grinding mama who now has a child with celiacs. I really want to keep making my own fresh ground wheat bread for DH and the other dc. I do NOT try to use the same grain mill for both wheat/GF grains. When I grind wheat, it floats in the air ~ is this an issue? Do I need to move the grain mill to a storage closet away from the kitchen? He is incredibly sensitive right now (I have heard that he should get less sensitive?). For the most part, unless we slip up by accident, he is much better, but he his stools are still loose and he does still have some stomach cramping. I am concerned about the wheat grinding, etc. Any thoughts?

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I would grind outside or somewhere he's not going to be or wheat dust won't get back in his living/breathing space. I just wouldn't chance it.

 

I wouldn't, either. Particularly since I'm sure the dust will settle on kitchen utensils, etc., and there could be ongoing cross-contamination.

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You've got one sick child who needs something close to perfection for him to be well. The rest of you can be healthy without the perfection of home ground wheat. I would seriously consider giving up an A+ in wheat products and buy any wheat products you choose to get for the rest of the family, at least until your ds is doing really well and you are used to what it takes to keep him that way. I'm sure it will be hard as it must be a major value to you to grind/bake your own.

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Please don't grind wheat inside! The flour can stay in the air for up to two days! I have celiac and can't even have flour in my home because I am so sensitive. Some people with celiac can react to even microscopic amounts and then there are those with it who may not have outward symptoms to cross contamination, yet damage can still be happening internally. It's just not worth risking.

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Thank you for confirming my thoughts. I guess I at least need to put it in our storage room (attached to the house but not in the house). I feel like I just keep failing, but it is a learning process, I suppose. I have been gluten free for some time and it almost makes it more difficult because I am not very sensitive so the things that I think of as "safe" may not actually be safe for him at all. :confused: He is just incredibly sensitive right now. He will get less sensitive, right? I keep hearing that anyway. I am beginning to feel paranoid.

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Thank you for confirming my thoughts. I guess I at least need to put it in our storage room (attached to the house but not in the house). I feel like I just keep failing, but it is a learning process, I suppose. I have been gluten free for some time and it almost makes it more difficult because I am not very sensitive so the things that I think of as "safe" may not actually be safe for him at all. :confused: He is just incredibly sensitive right now. He will get less sensitive, right? I keep hearing that anyway. I am beginning to feel paranoid.

 

I wouldn't count on him becoming less sensitive. ... And I wouldn't continue to grind wheat or make bread for the rest of the family. Any first degree relatives of your son have a strong possibility of developing celiac themselves -- they should probably be minimizing contact with gluten too (though not necessarily eliminating). And there's just NO WAY to grind wheat safely and make bread safely for your son. ... And even if he doesn't show immediate, outward signs with every exposure to gluten, all of those exposures are damaging internally -- in ways that increase his later risk of cancers and other complications.

 

I'm sorry to be so hard on you. But I just don't think this is a risk you can continue to take.

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:grouphug:

 

You've already got the answers you need to this, so I'm just going to send support and say, "Welcome." The world of food issues is hard, and whole families have to make concessions.

 

Being paranoid, especially at first, is normal and is part of the journey to finding your kiddo's safe comfort zone.

 

If you *do* keep the grinder in a separate building, please don't forget to change your clothes before heading into your main house and spreading gluten particles.

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:grouphug:

 

You've already got the answers you need to this, so I'm just going to send support and say, "Welcome." The world of food issues is hard, and whole families have to make concessions.

 

Being paranoid, especially at first, is normal and is part of the journey to finding your kiddo's safe comfort zone.

 

Thank you, Spryte. You are sweet and I needed that.

 

If you *do* keep the grinder in a separate building, please don't forget to change your clothes before heading into your main house and spreading gluten particles.

 

Seriously! (me slapping forehead) I didn't even think about the clothes. I hate to do it, but I might just need to ditch the grain mill for now. I especially hate it because DH depends on it (it is a feel good food for him), my family completely will not eat store bought bread, and dd is a vegetarian. I am the one who heads up our wheat order co-op and the one who teaches everyone how to make bread :confused: I guess I need to find a new normal :001_huh:

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I'm another one in the 'wouldn't chance it' camp. I have a daughter who is extremely sensitive to gluten (most likely celiac but not officailly diagnosed). In addition to everything everyone else has mentioned, there is even a probability of cross contamination in your toaster and butter/jam containers. Toast cannot be toasted in the same toaster and if someone spreads butter on their whole wheat toast or bread and then sticks it back in the butter container, it's contaminated. *I* would get every trace of wheat out of the house.

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I have a true allergy, not celiac, but I wouldn't chance it. I eat gluten free most of the time (because even though other sources of gluten don't cause an allergic reaction to me; if they aren't gluten free there's a high likelihood of being contaminated).

 

Furthermore, I would encourage your entire household to go gluten free when eating at home. It really does make almost everyone feel better, and given that someone in your family has celiac, I would be VERY surprised if at least some of the others don't have it too, and simply aren't diagnosed.

 

DH has gotten so used to eating gluten free at home he gets upset when he finally gets around to eating whole wheat (when going out to lunch with work friends, for example), because he feels just awful for a day or two afterwards. There are a lot of theories out there about why (antinutrients, opiate-like substances in the whole grain, etc), but despite higher levels of certain vitamins a large amount of people feel less healthy when they eat large amounts of whole wheat - and those are people without celiac or wheat allergies in their families!

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I am the one who heads up our wheat order co-op and the one who teaches everyone how to make bread :confused: I guess I need to find a new normal :001_huh:

 

There's probably going to be a grieving process for you, and that's also normal. I had a terrible time at first, thinking of all the experiences DS would miss. Like your situation, his allergens were directly wrapped up in my life, so much that they were almost part of my identity.

 

Once you've grieved, maybe you will pioneer a gluten free grain co-op, and teach others to make yummy gluten free baked goods. Your DH will be wonderful taste-tester, since breads are a comfort food for him. :) Small comfort, I know, but one can dream...

 

One thing DH and I found is that the foods that were once comfort foods for us, that are now on the off list... Those foods are not so appealing now. There's something about knowing that a food can make your child deathly ill that just makes it less comforting. That came with time, too.

 

Hang in there.

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DH depends on it (it is a feel good food for him), my family completely will not eat store bought bread, and dd is a vegetarian. I am the one who heads up our wheat order co-op and the one who teaches everyone how to make bread :confused: I guess I need to find a new normal :001_huh:

 

I'm sorry. It sounds like it will be a big adjustment for all of you. If your dh is not open to having a GF household, and doesn't want store bought bread, could you buy homemade bread from one of your co-op friends? If you taught them all to make bread, you could find someone using the recipe and techniques your family is used to. When I was grinding wheat, and baking bread for my family, I would have helped out a friend in your situation. :grouphug:

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Do you have a friend you could visit and grind/bake with at her house? Maybe she could grind before you get there to minimize dust for your clothing?

 

Maybe someone would bake for you and charge you? Might be a blessing for someone else to make a few extra dollars.

 

Those are excellent suggestions.

 

Maybe you have a friend who would love a grinder, and you can arrange a long-term loan where she'll grind and bake for you, either in exchange or for a reduced market rate loaf of bread?

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it is a grieving process and an adjustment for the whole family. I'm sure you enjoy your role at the co op and your dh loves your bread.

 

I used to bake bread. My dh liked to bake bread too--he made most of our bread, a loaf or two a week way back then. And then he couldn't anymore and I didn't anymore either.

 

I poured all my energy into relearning baking and cooking. I bake gf bread. The family likes it.

 

11 years post diagnosis it's no big deal, but it does take an adjustment.

 

Remember, celiac is genetic. The gene came from one the parents. Your ds may have both genetic markers and genes from both of you. Your other dc may have one or both genetic markers and simply have not developed it. You could develop it anytime, if you have the genetic marker. In other words high reliance on gluten containing foods in your household may not be a good thing since there are other people who are at risk for manifesting this disease.

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Shower and change THERE before you head back home.

 

You will most likely find an accommodating friend (if you pay them back for their hospitality with fresh baked bread!).

 

If you bake bread with gluten in your house you are contaminating your whole kitchen AND yourself. If the kitchen has an 'open' floor plan you can contaminate the whole house.

 

If you bring food with gluten in your house it needs to be kept separate-- separate cutting board/utensils-- and preferably plates you serve the food on!

 

Do not wash the gluten free and gluten dishes together...

 

ANYONE who eats food with gluten must wash their hands (change their clothes if there were crumbs) as soon as the meal is finished.

 

This is extreme--but if your child's health is at risk it is worth the 'trouble'.

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Shower and change THERE before you head back home.

 

You will most likely find an accommodating friend (if you pay them back for their hospitality with fresh baked bread!).

 

If you bake bread with gluten in your house you are contaminating your whole kitchen AND yourself. If the kitchen has an 'open' floor plan you can contaminate the whole house.

 

If you bring food with gluten in your house it needs to be kept separate-- separate cutting board/utensils-- and preferably plates you serve the food on!

 

Do not wash the gluten free and gluten dishes together...

 

ANYONE who eats food with gluten must wash their hands (change their clothes if there were crumbs) as soon as the meal is finished.

 

This is extreme--but if your child's health is at risk it is worth the 'trouble'.

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I get sick in the hair salon if someone sprays something with wheat in it. Do you know how many hair products contain wheat?

 

I now go to a hair stylist who has her private room, and she doesn't spray anything on my hair ever.

 

I can't walk in my in-laws kitchen because there is flour everywhere.

 

Grinding fresh wheat bread for the rest of your family is no longer your top priority. There are so many other grains/seeds/nuts that you can use for yummy and healthy bread.

 

You need to treat celiac as you would a severe peanut allergy. My friend has a ds who is very allergic to peanuts. He can react to peanut particles in the air. Therefore she has zero peanut products in her house.

 

As for becoming less sensitive, I have no idea where you heard that. That has not been the case with me so far. If anything I've become more sensitive and this seems to be the case with other celiacs I know.

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:grouphug:

 

You've already got the answers you need to this, so I'm just going to send support and say, "Welcome." The world of food issues is hard, and whole families have to make concessions.

 

Being paranoid, especially at first, is normal and is part of the journey to finding your kiddo's safe comfort zone.

 

If you *do* keep the grinder in a separate building, please don't forget to change your clothes before heading into your main house and spreading gluten particles.

 

It is hard. It's hard to accept the disease and it's a difficult lesson to learn how to cook safely.

 

I think you'd also need to wash your hair after grinding wheat.

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Seriously! (me slapping forehead) I didn't even think about the clothes. I hate to do it, but I might just need to ditch the grain mill for now. I especially hate it because DH depends on it (it is a feel good food for him), my family completely will not eat store bought bread, and dd is a vegetarian. I am the one who heads up our wheat order co-op and the one who teaches everyone how to make bread :confused: I guess I need to find a new normal :001_huh:

 

 

There are SO so so many other breads you can make. Healthier than whole wheat even.

 

Living Gluten Free for Dummies is a great book. It explains how to have gluten safely in the kitchen if you decide to not make your kitchen 100% gf. She also explains all the things to consider in terms of cross contamination.

Edited by Kleine Hexe
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I grind wheat in my Vitamix, so the particles don't float in the air during grinding. But when I pour it into another container, some residue may settle on the counter. Same thing when I buy regular flour at the store ~ when I open the bag, a puff of flour floats into the air and settles on the counter. Because of cross-contamination, the safest thing is for the entire family to go gluten free. I did some reading about it when we thought my oldest had celiac disease, so I can sympathize with how hard it is. :grouphug:

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I cried when my daughter was diagnosed. I didn't cry because of her diagnosis, I cried because I had finally learned how to cook and all of my recipes were wheat. It was a new learning curve for me and not an easy one. You find your new normal. Now, it's easier to cook, but it's been several years. :)

 

I'm wondering if perhaps you mixed up your information about him becoming less sensitive over time? He will definitely become less ill (if he's had daily stomach aches, 'tummy' problems, etc) but my understanding is that sensitivity increases over time. My daughter becomes ill over the smallest amount and her reaction time has increased. A reaction can put her out for about 7 - 11 days.

 

Good luck. It's not easy on anyone. (I agree with the others by the way - no wheat grinding).

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Dd and dh have celiacs and I'm gluten intolerant. Your LO will more than likely get more sensitive, not less.

 

For example, dh was sick for years before we figured out he had celiacs. There was no real rhyme or reason to it though. It wasn't like as soon as he ate gluten he was immediately sick. Of course he was probably eating gluten with almost every meal. I think his body was just in over-drive. He had OCD, 24/7 headaches, joint pain, depression, he was in the bathroom quite often, and lots of other little things. After he went GF all those things cleared up but now he can't have the slightest contamination without spending a night in the bathroom horribly sick and having about a week of headaches. MIL put a regular waffle in our GF toaster by mistake and dh thought it would be no big deal. He was sooooooo sick though.

 

Same with me. I had psoriasis for years on my scalp. Going GF made it completely go away. However now if I get glutened I get psoriasis on my scalp, inside my ear (ew), and on my legs.

 

As for bread, I know it's hard to give up when you're used to making it yourself. I've BTDT. Making bread was cathartic for me.

 

I do make GF bread sometimes but it is nothing like making regular bread. There's no kneading. There just isn't the soul that goes into GF bread like making regular bread. I don't know, maybe I sound crazy but it was an art for me. Anyways GF bread is like muffin batter - just not the same at all. Instead I put my art/soul into creating GF recipes and I've actually been really successful at it. Turns out I probably found my niche in life so now I'm actually kind of thankful for our GF status.

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You've got one sick child who needs something close to perfection for him to be well. The rest of you can be healthy without the perfection of home ground wheat. I would seriously consider giving up an A+ in wheat products and buy any wheat products you choose to get for the rest of the family, at least until your ds is doing really well and you are used to what it takes to keep him that way. I'm sure it will be hard as it must be a major value to you to grind/bake your own.

 

:iagree: I almost never even allow wheat flour in my home because it becomes so airborne. Celiac's an autoimmune issue and any exposure will make it so much worse.

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Thank you so much for all of your replies. I honestly don't know whether to feel encouraged (hey, you all have survived, right?) or discouraged? :001_smile:

 

I know we will get through this, but I am having a difficult time adjusting at the moment. I thought I knew what I was dealing with since I am also gluten free, but then it has hit me that this is an entirely different game. I just need to step back and breathe. Thank you again for your thoughts.

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I've heard that people with celiac can become less sensitive to other trigger foods (like dairy) as their gut heals. Maybe that is what you heard?

 

Possibly. DS has lost all ability to digest any amount of dairy. He ate some chips that were GF but we didn't realize that the last ingredient was lactose and it flared his stomach cramps and diarrhea up again. Maybe that is what I am thinking about? I honestly can't remember where I heard it. Oh well.

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I do make GF bread sometimes but it is nothing like making regular bread. There's no kneading. There just isn't the soul that goes into GF bread like making regular bread. I don't know, maybe I sound crazy but it was an art for me. Anyways GF bread is like muffin batter - just not the same at all. Instead I put my art/soul into creating GF recipes and I've actually been really successful at it. Turns out I probably found my niche in life so now I'm actually kind of thankful for our GF status.

 

My mom bought me Schar bread mix and I do have to knead it. I can't use my bread machine or mixer because the dough gets too heavy. I love kneading it although you have to flour your hands well to keep from sticking. I've also used wet hands to prevent sticking. I love this mix for loaf bread, rolls, and pizza crust. It gets a nice crunchy crust which I missed.

 

BTW, I made your peach blueberry pie yesterday. It was yummy! :D

 

 

 

Possibly. DS has lost all ability to digest any amount of dairy. He ate some chips that were GF but we didn't realize that the last ingredient was lactose and it flared his stomach cramps and diarrhea up again. Maybe that is what I am thinking about? I honestly can't remember where I heard it. Oh well.

 

That would make sense that that is what you heard. This was the case for me. My GI told me to stop dairy for awhile. It took about 6 months before I could tolerate dairy again. I still can't tolerate high fat foods. A lot of celiacs have a hard time digesting fats due to the pancreas not producing certain enzymes. I can't eat things like avocado for example.

 

Have you read any books? A lot of confusion can be cleared up if you read some good books on celiac.

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Oh yes, that makes sense that what you heard about getting less sensitive was about other foods.

 

Before my dd was diagnosed at 2 yrs old she was reacting to all of the top 8, corn (and all it's many many derivatives), and random things like avocados, bananas, olives, etc. There were very few foods she & I could eat (she was still nursing). She was seemingly able to eat oats and spelt OK though so that's how she was getting continuously glutened. Once we took out all gluten her other food intolerances went away after about 3-4 months.

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I can relate, somewhat. My middle DD was diagnosed last year, and I also turned out positive after testing for celiac. Just after I bought a HUGE amount of grain for my well-used Wondermill.

 

Everything has just sat for a year. I can't bring myself to try to clean it out, for fear of contaminating DD if we switch to beans/rice in the grinder -- I know there are trace particles. The Zoji bread maker will go to a relative when I can stand to part with it. There is just no way I can put my daughter (or me) through pain just for some expensive kitchen products which are totally glutened. Sigh.

 

I recently bought Country Beans, which has many great recipes for making bread (and other things) from beans. Hope to try it all soon.

 

HUGS. It is not easy. It takes time for a "new normal" to set in. We are one year in, and it is still not easy, but it is better.

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lol thanks! And yeah, that recipe is pretty good, but seriously it's so incredibly rich I think I could only ever eat it like once a year.

 

I think I have all of the ingredients to try it now. I've mostly been baking with almond meal, but dd is begging for soft, gooey cookies and desserts. Do you happen to have a recipe like that? So far I've been most successful with prepackaged, refrigerated GF cookie dough. :lol:

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I can relate, somewhat. My middle DD was diagnosed last year, and I also turned out positive after testing for celiac. Just after I bought a HUGE amount of grain for my well-used Wondermill.

 

Everything has just sat for a year. I can't bring myself to try to clean it out, for fear of contaminating DD if we switch to beans/rice in the grinder -- I know there are trace particles. The Zoji bread maker will go to a relative when I can stand to part with it. There is just no way I can put my daughter (or me) through pain just for some expensive kitchen products which are totally glutened. Sigh.

 

I recently bought Country Beans, which has many great recipes for making bread (and other things) from beans. Hope to try it all soon.

 

HUGS. It is not easy. It takes time for a "new normal" to set in. We are one year in, and it is still not easy, but it is better.

 

Thank you. It does help. Especially right now when I feel completely helpless. I am being super careful, yet he had another flare up tonight ~ he is miserable and I feel like I am incapable of getting this thing right. As far as I know, we haven't eaten anything questionable. :confused: He was accidentally glutened on Friday :glare:, could this still be from the Friday incident or is this something new. He was already slim and he has now lost over 10% of his body weight and I feel desperate to figure this out.

 

We haven't used the grain mill in about a week and we have decided to shelve it for now.

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He was already slim and he has now lost over 10% of his body weight and I feel desperate to figure this out.

 

:grouphug: That sounds stressful and scary. :001_huh: It is still so new. I'm sure you'll get it figured out quickly. :grouphug: Your little guy is lucky to have a mom who can cook and bake. I'm sure you'll get him feeling better and plump him up in no time. Just take a peek at some of the yummies on Shelsi's blog. ;)

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The hardest part of going gluten and dairy free for me was not being able to bake our old recipes with my husband anymore. We did (if I say so myself and believe me I was told this a lot) amazing cookies, breads, biscuits, pies and cakes. It wasn't that hard to give up eating what we made, it was hard to give up that niche in our circle for fresh baked goods. After we adjusted, we started exploring gluten free baking and we have found a lot of recipes that are gluten and dairy free but just as good. Good enough our gluten and dairy eating friends love them. It's hard. But I would drop gluten from your home kitchen completely and transition everyone to gluten free at home. They can indulge at a local bakery or when dining out. I know it sucks. I would list your mill on Craigslist or something.

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Thank you. It does help. Especially right now when I feel completely helpless. I am being super careful, yet he had another flare up tonight ~ he is miserable and I feel like I am incapable of getting this thing right. As far as I know, we haven't eaten anything questionable. :confused: He was accidentally glutened on Friday :glare:, could this still be from the Friday incident or is this something new. He was already slim and he has now lost over 10% of his body weight and I feel desperate to figure this out.

 

We haven't used the grain mill in about a week and we have decided to shelve it for now.

 

It could from Friday. Different people have different reaction times/lengths and it will change the longer he's GF. Dh will react for 4-5 days usually. Dd only has gastro symptoms for a few hours but her behavior is atrocious for a good 1.5 weeks afterward.

 

Have you made changes with your kitchenware yet? You'll need a new pasta strainer, wooden spoons, pots, pans, baking sheets, etc. You really can't trust the dishwasher to get all the residue off. You'll also need a dedicated GF toaster. Which is why so many people end up going all GF in their households. In our family 3 out of the 4 of us are GF so everything I make is GF. However my ds, the gluten eater, has a few things he keeps on his own shelf and that he's allowed to prepare on one section of the counter (that has no drawers under it where crumbs could find there way in). He has frozen waffles, a loaf of bread, crackers, and cereal that are not GF. He also has his own mayonnaise, jelly, peanut butter, cream cheese, butter, etc. I refuse however to cook anything gluten so if he wants a grilled cheese sandwich he has to have it on GF bread - I don't want to have separate pans.

 

I think I have all of the ingredients to try it now. I've mostly been baking with almond meal, but dd is begging for soft, gooey cookies and desserts. Do you happen to have a recipe like that? So far I've been most successful with prepackaged, refrigerated GF cookie dough. :lol:

 

I've got soft sugar cookies, kind of like the ones you get from the store. http://glutenfree100.blogspot.com/2012/06/grandmas-soft-gluten-free-sugar-cookie.html

 

Oh and my cinnamon rolls are definitely gooey - they are very Cinnabon-like (and just as terrible for you! lol): http://glutenfree100.blogspot.com/2012/04/gluten-free-cinnamon-rolls-recipe.html

 

Not my recipe but these brownies are to die for (and her other recipes are awesome too): http://glutenfreegoddess.blogspot.com/2006/01/dark-chocolate-brownies.html

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After we adjusted, we started exploring gluten free baking and we have found a lot of recipes that are gluten and dairy free but just as good. Good enough our gluten and dairy eating friends love them.

 

Katie, can you share some of these recipes? I read about GF baked goods that taste as good as the real thing, but I have yet to experience that myself. :confused: I've even gone with some mixes, thinking they'd be sure bets. :tongue_smilie:

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I've got soft sugar cookies, kind of like the ones you get from the store. http://glutenfree100.blogspot.com/2012/06/grandmas-soft-gluten-free-sugar-cookie.html

 

Oh and my cinnamon rolls are definitely gooey - they are very Cinnabon-like (and just as terrible for you! lol): http://glutenfree100.blogspot.com/2012/04/gluten-free-cinnamon-rolls-recipe.html

 

Not my recipe but these brownies are to die for (and her other recipes are awesome too): http://glutenfreegoddess.blogspot.com/2006/01/dark-chocolate-brownies.html

 

Thank you! We'll be needing sugar cookies for Christmas. :001_smile: Cinnamon rolls used to be our Christmas morning tradition, but they're so much work! That would be sure to make dd smile. Thanks.

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Katie, can you share some of these recipes? I read about GF baked goods that taste as good as the real thing, but I have yet to experience that myself. :confused: I've even gone with some mixes, thinking they'd be sure bets. :tongue_smilie:

 

 

Oh the mixes are awful IMO. Made me sad. I love the website http://www.glutenfreegoddess.com. I have played around with her recipes and never been steered wrong so far. At a party this weekend no one could believe the brownies were GF and DF. They are almond meal and rice flour based. The banana chocolate chip bread is really a hit at my husband's work. I think she has a book.

 

The biggest thing is that for my gluten filled childhood sensibilities, the vegan and or low sugar gluten free stuff is awful. Eggs are magic for baking. Magic. Sugar is a treat, and makes gluten free stuff work well. Cookies from the GF and vegan no sugar bakery? I would rather eat sand. It would taste better to me.

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I'd say most of my stuff tastes like the "real" thing. I had another blog that I did initially called Recreating Happiness. It's a total organizational nightmare of a blog that I'm hoping to re-do and move all my stuff over to.

 

The first things I worked on were chocolate chip cookies and pie crust. Those were my two things I just HAD to have that actually tasted good and not like those nasty GF mixes. Personally I think I nailed it.

 

My banana bread is really spot on too.

 

I had given up on Belgian waffles thinking they just couldn't be done but then we went to Disneyland and they made us some awesome GF waffles. So after many, many, many attempts I was able to recreate those. I'm actually most proud of my waffles.

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