more celiac questions

[ktgrok]

Obviously, I will speak with the doctor as well 🙂

1. If it has no gluten ingredients, and does mention allergens like nuts, soy, but does NOT mention wheat or gluten, is that probably safe? Looking at Aldi chili chocolate bars, which are for me and I don't have celiac, and seem a low contamination risk anyway, but still want to know. Also, more importantly, Schwan's Passion Punch Sherbert, which is one of the few foods my food restricted kid actually loves. This is the ingredient/nutrition info, it says "contains milk" so I'd like to think it would mention wheat, but of course, that doesn't address cross contamination, etc. Sigh. : NGREDIENTS: WATER, SUGAR, CORN SYRUP, MILK, CREAM, WHEY, APPLE JUICE CONCENTRATE, CITRIC ACID, NATURAL FLAVOR, COLORED WITH VEGETABLE JUICE AND ANNATTO, TANGERINE JUICE CONCENTRATE, MONO & DIGLYCERIDES, LOCUST BEAN GUM, GUAR GUM, PECTIN.
CONTAINS: MILK

2. I'm going to be replacing cutting boards, colanders, spatulas, etc. What about ceramic knives? Would those be porous? I'm assuming plastic plates/bowls from Ikea as well.

3. If either/both DD test positive via bloodwork then what? Do we really need to do endoscopy on them, as well? Or would positive bloodwork plus known family history be enough to say, yes, that's Celiac. Keeping in mind that DS's did not have very high numbers at all. His TTG IGA was 6, with ,4 being normal. So we did need to do the endoscopy with him, but with them? And if so, that means going gluten free for him, but keeping them on gluten until then, if they are positive, which sounds like a PIA. I guess I could get self contained gluten snacks for them or something, and have them eat outside.  

4. Can/should I keep the bread makerand just clean it? Or get rid of it? 

 

[Jean in Newcastle]

1.  Wheat has to be mentioned on labels by laws.  Gluten does not.  But the foods you mentioned look fine.  There is an app that my dd uses on her phone at the grocery store called ipiit.  https://www.ipiit.com/   It has helped us a lot.

2.  ceramic knives should be fine.

3.  I think that just the blood test would be fine for siblings for a diagnosis of celiac.

4.  Bread maker - hmm.  I think that it would be really hard to clean but you could probably get a new insert and mixing blade or paddle or whatever you call that. 

[Ellie]

1. You need to find a good list of hidden gluten ingredients, because, well, hidden gluten. For example, often "natural flavor" includes gluten. And y'all might have surprising reactions: a dear friend who is almost a worst-case-scenario gluten victim can have soy beans in general, but tofu hurts her. She cannot have most cider vinegars (because sometimes that process makes gluten); she can have distilled white vinegar. She cannot have any tomato products made by Hunts, but she can have other manufacturers' tomato products.

[Granny_Weatherwax]

Yes, be careful of the generic "natural ingredients" and the "food starch" ingredients. If I have a question, I usually call the manufacturer or send an email. It might mean having to postpone a recipe for a bit but I stick to the mantra 'better safe than sorry'.

Also, one item might be GF but a similar item might not. For example, Lea and Perrins' worcestershire sauce is GF but the Aldi's brand is not

Depending on how sensitive your celiac person is, replacing the mixer might be necessary. The fine powder of ground flour gets into those nooks and crannies and can be impossible to clean.

[ktgrok]

oh man....not my kitchen aid?!?!?!!?

ARGH! I ADORE that thing. I use it constantly. And that will NOT be cheap to replace. Sigh. But you are right, flour gets all blown up into the nooks and crannies. Hells bells. 

 I guess I have a birthday coming up and maybe I can get a new one then. Sigh. 

Hopefully I can at least sell it on facebook or craigslist or something. Blergh. 

 

[Faith-manor]

When in doubt, google on your phone while shopping. I have found that numerous celiac health sites have evaluated hundreds of thousands of products. Most likely you can google the product name and flavor with GF, and it will pop up with a recommendation as safe or not.

One of the pitfalls is "spices", "natural flavorings" because they aren't listing individual ingredients so there could be wheat/gluten in there or a high probability of contamination.

[ktgrok]

So hubby thinks he can take apart the stand mixer and clean it...we'll see. 

[wendyroo]

21 minutes ago, Ktgrok said:

oh man....not my kitchen aid?!?!?!!?

ARGH! I ADORE that thing. I use it constantly. And that will NOT be cheap to replace. Sigh. But you are right, flour gets all blown up into the nooks and crannies. Hells bells. 

 I guess I have a birthday coming up and maybe I can get a new one then. Sigh. 

Hopefully I can at least sell it on facebook or craigslist or something. Blergh. 

 

You might want to hold off on a new mixer until you get a feel for how your menu and cooking will change after going gluten free.  I've been cooking wheat free for about 6 years now, and, yeah, it impacts all aspects of feeding a family.  We have found that wheat/gluten free substitutes are almost never worth the time and $$$, so in general we just cook with naturally wheat free foods.  I certainly could bake wheat free things, but they are just so expensive and disappointing, that it would be very rare for me to have any use for a mixer.

Wendy

[kbutton]

1 hour ago, Ktgrok said:

oh man....not my kitchen aid?!?!?!!?

ARGH! I ADORE that thing. I use it constantly. And that will NOT be cheap to replace. Sigh. But you are right, flour gets all blown up into the nooks and crannies. Hells bells. 

I kept my kitchen aid, but I would not bake anything in my bread machine. My husband detail cleaned my Kitchen Aid. My mom uses her KA, and I don't react (I am pretty sensitive). Additionally, if you get to a point where you do baked goods, or your other kids end up not celiac at all, and you want to make some regular stuff (cheaper!!!), what we do when I'm at my parents is make cookie dough up to the point of adding flour. Then we split the dough, and mix in the flour--GF or regular--in separate containers by hand. No duplicate batches of GF cookies or non-GF cookies just for everyone to have something they like.

2 hours ago, Ktgrok said:

Obviously, I will speak with the doctor as well 🙂

1. If it has no gluten ingredients, and does mention allergens like nuts, soy, but does NOT mention wheat or gluten, is that probably safe? Looking at Aldi chili chocolate bars, which are for me and I don't have celiac, and seem a low contamination risk anyway, but still want to know. Also, more importantly, Schwan's Passion Punch Sherbert, which is one of the few foods my food restricted kid actually loves. This is the ingredient/nutrition info, it says "contains milk" so I'd like to think it would mention wheat, but of course, that doesn't address cross contamination, etc. Sigh. : NGREDIENTS: WATER, SUGAR, CORN SYRUP, MILK, CREAM, WHEY, APPLE JUICE CONCENTRATE, CITRIC ACID, NATURAL FLAVOR, COLORED WITH VEGETABLE JUICE AND ANNATTO, TANGERINE JUICE CONCENTRATE, MONO & DIGLYCERIDES, LOCUST BEAN GUM, GUAR GUM, PECTIN.
CONTAINS: MILK

2. I'm going to be replacing cutting boards, colanders, spatulas, etc. What about ceramic knives? Would those be porous? I'm assuming plastic plates/bowls from Ikea as well.

3. If either/both DD test positive via bloodwork then what? Do we really need to do endoscopy on them, as well? Or would positive bloodwork plus known family history be enough to say, yes, that's Celiac. Keeping in mind that DS's did not have very high numbers at all. His TTG IGA was 6, with ,4 being normal. So we did need to do the endoscopy with him, but with them? And if so, that means going gluten free for him, but keeping them on gluten until then, if they are positive, which sounds like a PIA. I guess I could get self contained gluten snacks for them or something, and have them eat outside.  

4. Can/should I keep the bread makerand just clean it? Or get rid of it? 

 

1. Aldi has tons of GF stuff, and if it doesn't say on it that it's specifically GF, I usually avoid it if it seems like it would be something that could be cross-contaminated. For instance, the corn tortillas have no gluten ingredients but do not say GF. I assume they either don't want to test to be able to say, or they are in a plant with gluten. I did buy something from Aldi the other day that didn't explicitly say GF (can't remember what), but whatever it was, it didn't seem like something that was likely to come into contact with gluten. I know, clear as mud.

If it's the Moser Roth chocolate you are asking about, I never ate the chili one, but I had trouble with other Moser Roth bars that didn't say GF. I have other sensitivities, so it could be a coincidence. I did everything I could to pin my issues on something else because they have the best really dark chocolate, but nope, it seems to be the bars. Just a heads-up. 

2. I wouldn't worry too much about plastic bowls and such, at least not right away. To be honest, you are going to screw up a few things before you get really good at this. I would prioritize hard to clean stuff that you use a lot. After that, sure, maybe you can replace stuff in bits over time, but I am pretty sensitive, and I haven't had issues with things like plastic bowls. I would just wash them several times--through the dishwasher a few times and then some by hand, etc. I do have some specifically GF items that are hard to get clean, but most things I just washed and washed, and I haven't had a problem. Don't forget to wash (or replace) all your oven mitts, dishcloths, etc. I designated a certain color to be GF, and they get washed separately. I also have a plastic (Rubbermaid style) dishpan that is always GF, so that if I have to wash something up quickly, and I am not sure how the sink is doing, I can wash dishes in those. 

3. I don't know about what you'll be told to do. You should ask the doctor who will be giving the diagnosis. It will be up to what the doctor is comfortable with. How much you segregate your other kids while eating gluten is going to depend a lot on how easy it is to contain, and then on whether your son is liable to cross-contaminate himself by not understanding or by doing something like putting his food on their crumbs if they don't get wiped up fast enough. But yeah, you could have them eat pre-packaged stuff outside or in a specific area. 

4. Keep in case you don't all go GF, and you get comfortable enough to use it safely down the road. Don't put GF stuff in it. I think you are stuck getting a new one if you want to bake GF stuff in it. I feel more strongly about this than I do the KA mixer.

29 minutes ago, Indigo Blue said:

Just thought of one more important thing, and this may have already been mentioned. I don't know if your ds eats oatmeal, but if others in your family end up testing positive, you must get only gf oats. They are getting harder to find. Nature's Path makes them. They are specifically labeled as gluten free. Most other oats are contaminated with wheat. Be careful. Corn grits are okay.

Oats--Bob's Red Mill, Trader Joe's (they will specifically say it on their GF oats), and Bakery on Main are ones that I can get pretty consistently. I think at least two of those would be available online. Some bulk food stores (particularly Amish or Mennonite stores) will carry GF items--just find out what they do to avoid cross-contamination if they re-package any of their items. Also check health food stores or upscale grocery stores. Sometimes they are more money; sometimes not at all.

I am not sure where all Wegman's is, but they have one of the best thought out selections I know of for GF items of all kinds--ready made and ingredients. I don't live near one, but my parents have a couple sort of nearby, and I stock up when I visit them, lol! 

[73349]

The Gluten-Free Barcode Scanner app and the certified gluten-free label will save time in the store. Some grocery chains put a GF label on the shelf (in my region, Food Lion and Lowes Foods), some are inconsistent (Whole Foods), and some don't (Harris Teeter). Barley is the bane of my existence, as is Processed in a facility that also processes wheat (I'm looking at you, 365 brand).

The Find Me Gluten Free app will help with restaurants.

All plastic things that touch food should probably go. Also beware of your basting/pastry brush, dish sponge, etc. And you probably already know, but sifters, mesh strainers, toasters and waffle irons. I got rid of the bread machine--gf recipes are so different anyway it might not work well. I replaced my cast iron because we don't have a self-cleaning oven with which to strip them.

Check every single food in the house, including soup broth, condiments, etc.

Our doc said they don't put an official diagnosis on someone's record without endoscopy; they consider the blood test a screening to indicate that biopsy was needed. They might feel differently if family history was established. An official diagnosis would be needed for a 504 plan in a school and I would suppose probably for military exemption in the event of a draft (no MREs for celiacs and you have to have been eating gluten for tests to be positive).

If you use Plan to Eat, you can friend me (whitehawk); all my recipes are gf.

Edited January 31, 2019 by whitehawk

[ktgrok]

1 hour ago, wendyroo said:

You might want to hold off on a new mixer until you get a feel for how your menu and cooking will change after going gluten free.  I've been cooking wheat free for about 6 years now, and, yeah, it impacts all aspects of feeding a family.  We have found that wheat/gluten free substitutes are almost never worth the time and $$$, so in general we just cook with naturally wheat free foods.  I certainly could bake wheat free things, but they are just so expensive and disappointing, that it would be very rare for me to have any use for a mixer.

Wendy

I actually use it more for shredding chicken, mixing meatloaf, whipping whipped cream, etc than anything else. 

[ktgrok]

41 minutes ago, Arctic Mama said:

That’s me too.  It’s really just easier to not buy packaged products or try to bake fakes unless I’m desperate.  Meat, veggies, beans, fruit, rice, those are all much easier to manage when you’re watching out for the littlest cross contact.  I will cop to buying peanut butter cups or GF pasta every once in awhile, but that’s like.... every month or three.

That's where I would like to get, for everyone's health. But right now, it's just getting him to eat anything. He eats no meat other than one brand of sausage and fast food nuggets. Baked beans but no other beans, and hardly anything else right now. No cheese, rarely nuts (and the kind he likes, honey roasted, were not gluten free). So I am getting some junky stuff to tempt him, until I get him eating better. He ate part of a  slice of Aldi gluten free pizza today, and actually liked their gluten free bread (I didn't) and ate part of a slice. He also today had his last Cliff bar which was pretty tragic as he was living off of those. And some plain greek yogurt with honey. I have no idea what he will eat for dinner. 

Edited January 31, 2019 by Ktgrok

[ktgrok]

1 minute ago, Indigo Blue said:

Sorry...me again....just thought of another thing. Be careful in the bulk bins!! A lot of cross contamination waiting to happen. Those items are sometimes not labeled as being possibly contaminated. But they often are "shared equipment" sort of things. Easy way to get glutened and then end up scratching your head trying to figure out what you did wrong.

And again...if you can find those Bell n Evans gluten free nuggets, they really are soooo good. They remind me a lot of Chic-fil-A. I think this is your best shot to find a replacement for ds' nuggets. If he doesn't like them, they won't be wasted. Applegate Farms also makes pretty good gf ones.

It's great that your ds likes the Aldi bread. It's more affordable.
 

And...he dumped half the bread on the floor by accident. Sigh. 

He LOVES the Aldi brownie bites. Can't live on those, but yay for a win!

[Lady Marmalade]

@Ktgrok, could you try making your own breakfast sausage?  It's really very easy, you just need to figure out the right proportions of spices.  You probably won't want to make links, but little sausage patties freeze beautifully- you could make a large batch and freeze once you figure out the blend he prefers.   

There are tons of different recipes out there.  This is the one I use, only I don't use the crushed red pepper flakes.

https://www.allrecipes.com/recipe/16359/breakfast-sausage/

 

[Jean in Newcastle]

The Ghiradelli’s and Betty Crocker gf brownie mixes are really good. 

Lara bars are often gluten free. 

[Junie]

Which sausage does your ds like?

[ktgrok]

11 minutes ago, Junie said:

Which sausage does your ds like?

Banquet - the really crappy brand, lol

I might be able to get him on board with making our own...maybe. I do have some ground pork in the freezer...

[City Mouse]

when my DS was 13 and had to give up gluten, we did use a lot of the expensive gluten free alternatives, and some not so expensive. It can take a lot of trying to find his favorites. (He did not test positive for celiacs, but throws up when he eats anything with gluten)

Enjoy Life brand products have been good. There are lots of different bars, cookies, chocolates. We haven't used any of the mixes yet, but they have great customer service for mail order. Online they sell a sample pack for like $15 which would allow you try out a variety of products. I tend to use Bobs Red Mill mixes because that is what is easiest to find where I live. Glutino brand is a bit expensive, but they have some kinds of cookies the mynDS loves, and Skinny Girl cookies has a "thin mint" style cookie that is gluten free and tastes great. It doesn't even seem expensive when you compare to the Price of Girl Scout cookies.

Walmart has store brand GF products that are not terribly expensive including boxed Mac & cheese, granola bars, cookies. 

Since I remember that you live in a Florida, I wanted to share that Disney is apparently one of the best places to try to eat out for someone with celiacs. They have separate prep areas, separate fryers. Allergy friendly chicken tenders are all over

[kbutton]

I wanted to clarify that the bulk food stores I am talking about are not where you get stuff in bins. I forget that the bin kind can be more typical than the kind I am talking about until someone speaks up about those kind of bins. 

[Junie]

1 hour ago, Ktgrok said:

Banquet - the really crappy brand, lol

I might be able to get him on board with making our own...maybe. I do have some ground pork in the freezer...

This is the kind I eat (Banquet Brown n Serve Original) and I've never had a reaction to it.*

 

*FTR, I have not been diagnosed with Celiac disease, but I have a wheat allergy and I am pretty sensitive.  I've been gluten free for 10 years.

[ktgrok]

4 minutes ago, Junie said:

This is the kind I eat (Banquet Brown n Serve Original) and I've never had a reaction to it.*

 

*FTR, I have not been diagnosed with Celiac disease, but I have a wheat allergy and I am pretty sensitive.  I've been gluten free for 10 years.

That's actually good to know! They don't list any gluten ingredients, but they manufacture a ton of stuff, so cross contamination or me missing a hidden gluten was my concern. 

Further research just now shows that their parent company has a policy of labeling any foods with gluten as having it, so maybe it is safe. 

Edited February 1, 2019 by Ktgrok

[Junie]

13 minutes ago, Ktgrok said:

That's actually good to know! They don't list any gluten ingredients, but they manufacture a ton of stuff, so cross contamination or me missing a hidden gluten was my concern. 

Further research just now shows that their parent company has a policy of labeling any foods with gluten as having it, so maybe it is safe. 

I would ask his doctor how strict his diet needs to be. 

Personally, I eat some items that have a risk of cross contamination.   My own kitchen is cross contaminated* because I am the only one who is gluten free, so unless I have a reaction to a product I am willing to risk shared equipment, etc.  I don't necessarily recommend this method, but it works for us for now.

Since my reaction is an allergy, I will actually get a rash if I eat even a tiny amount of gluten.  (I even get a rash from touching a gluten product.)

*Edited to Add -- I *try* very hard to keep my food gluten free.  If I think that it has been contaminated with gluten I won't eat it.  

 

Edited February 1, 2019 by Junie

[ktgrok]

5 minutes ago, Junie said:

I would ask his doctor how strict his diet needs to be. 

Personally, I eat some items that have a risk of cross contamination.   My own kitchen is cross contaminated* because I am the only one who is gluten free, so unless I have a reaction to a product I am willing to risk shared equipment, etc.  I don't necessarily recommend this method, but it works for us for now.

Since my reaction is an allergy, I will actually get a rash if I eat even a tiny amount of gluten.  (I even get a rash from touching a gluten product.)

*Edited to Add -- I *try* very hard to keep my food gluten free.  If I think that it has been contaminated with gluten I won't eat it.  

 

Yeah, the problem is, we likely won't know if he has a reaction. We only found out he has celiac because I noted that he was eating ice, and that made me think the circles under his eyes might be anemia, not allergies like we always thought. So I had him tested for anemia and on a whim asked her to throw in a celiac blood test since that can be one cause of anemia in kids. Otherwise, we'd be clueless. He sometimes has some sort of loose stool, but nothing major. And yet, he has damage to his small intestine and reflux that has caused esophagitis, despite no complaints of reflux. 

So if he has some contact with gluten, we may very well not see any external signs, while he still has internal damage 😞

[Jean in Newcastle]

It took me a year of being off of gluten before I started to visibly and dramatically react to being glutened. But of course as you know he’s been reacting internally even though you couldn’t tell until you had the biopsy. 

[Junie]

I never had a reaction to gluten/wheat (that I know of) until after I went gluten free.  I think many people become more sensitive/more aware of reactions after they have been gluten free for a period of time.

[ktgrok]

GI got back to me - other kids have to stay on gluten until/unless endoscopy is needed. Heck. 

[Jean in Newcastle]

10 minutes ago, Ktgrok said:

GI got back to me - other kids have to stay on gluten until/unless endoscopy is needed. Heck. 

Where are they in the testing process?  Do you have a timeline?

If possible, I would be trying to find new gf foods for your son (doing the tasting trials etc.) but wouldn't try to go to a totally gluten free kitchen until the other kids have completed the process.  (This is assuming that the time line is for a couple of months or less). 

[ktgrok]

1 hour ago, Jean in Newcastle said:

Where are they in the testing process?  Do you have a timeline?

If possible, I would be trying to find new gf foods for your son (doing the tasting trials etc.) but wouldn't try to go to a totally gluten free kitchen until the other kids have completed the process.  (This is assuming that the time line is for a couple of months or less). 

They got bloodwork done today. We'll know more next week. If that is positive we need to get appt with GI, then endoscopy. But I need him to be gluten free ASAP so that we can see which of his mental health issues are related to gluten versus something else. He has a psych appointment in march. 

[prairiewindmomma]

He's liking cold stuff right now, right?
 

Does he like chocolate pudding?  One of the tips we got from SL-P was to give dd carnation instant breakfast for the vitamin and calorie boost.  The regular stuff is gluten free. You can make puddings from instant breakfast powder or from protein powder if you're trying to boost his intake. 

[ktgrok]

38 minutes ago, prairiewindmomma said:

He's liking cold stuff right now, right?
 

Does he like chocolate pudding?  One of the tips we got from SL-P was to give dd carnation instant breakfast for the vitamin and calorie boost.  The regular stuff is gluten free. You can make puddings from instant breakfast powder or from protein powder if you're trying to boost his intake. 

We actually did discovery the carnation breakfast things recently, and he does like them! We buy the remade shakes and keep them in the fridge for him. They have 10 grams of protein, which is probably the highest he gets some days. (he did eat some Aldi gluten free chicken nuggets yesterday!) I need to buy more of the breakfast shakes, only walmart has them around here. 

[ktgrok]

Oh, and while i was going through EVERY item in my pantry and cabinets and checking labels, and then vacuuming the cabinets and wiping them down, the hound dog was in the other room chewing up a box of cake mix, getting said cake mix all over the place. 

So yeah. Can't win. He got it all over the markers that were all on the floor, and I'm too tired to wash markers. I'll buy more tomorrow. 

[cintinative]

1. Unfortunately, barley and its derivatives are not one of the top 8 allergens.  Neither is rye. So you will need to look for these in the ingredients and not just rely on the "contains: wheat, soy, egg" list. Also be cautious of barley malt extract, malt extract, malt flavoring, etc.  I have not found rye hiding in things but barley is in more than you would think.  If the box is labeled gluten-free there is a standard for that (they have to meet a certain ppm gluten standard). There is debate in the Celiac community if that is "good" enough. There was an issue with Cheerios a couple (?) years ago because they had a batch of wheat flour that came in and was used and because they only batch test for the gluten, many boxes that were contaminated were not caught.  Or something like that.  We avoid anything that is processed on equipment with anything that has wheat. We also generally avoid "processed in a facility with" wheat. I'll be honest and tell you that since not all the companies report this information, I am not as diligent as I should be with it. Also remember oats can be a problem with Celiacs. They need to be gluten-free oats and even then they can cause a reaction.

2. Replace plastics. New colanders (or save your old for wheat pasta), new griddle, new toaster, new waffle iron, possibly new rice cooker if you cooked barley or wheat in it. I don't know that we replaced our cutting boards but they are dishwasher safe and I didn't really cut bread on them.  Maybe I should have?

3. If either/both DD test positive via bloodwork then what? Do we really need to do endoscopy on them, as well? Really the endoscopy is the gold standard for diagnosis, so yes. But it IS possible no one else in your family will test positive. Or that they will test negative now and ten years from now test positive.  My youngest and husband still eat gluten but we are careful. Honestly we cannot afford to have all of us gluten-free all the time. 

4. My understanding is that the flour gets all over inside the bread machine and so you cannot use it for gluten-free bread. The good news is that a bread machine is truly unnecessary for gluten-free bread. It doesn't need that punch down and second rise that gluten bread often needs.

 

[cintinative]

1 hour ago, Seasider too said:

 

Speaking of spices... gluten containing dessicants can be used. Gotta check those labels, too. 

 

 

What would this look like on the label? Most spices I buy are just one spice (e.g. oregano). Is this for blends?

[cintinative]

23 hours ago, Ktgrok said:

Yeah, the problem is, we likely won't know if he has a reaction. We only found out he has celiac because I noted that he was eating ice, and that made me think the circles under his eyes might be anemia, not allergies like we always thought. So I had him tested for anemia and on a whim asked her to throw in a celiac blood test since that can be one cause of anemia in kids. Otherwise, we'd be clueless. He sometimes has some sort of loose stool, but nothing major. And yet, he has damage to his small intestine and reflux that has caused esophagitis, despite no complaints of reflux. 

So if he has some contact with gluten, we may very well not see any external signs, while he still has internal damage 😞

 

I mentioned in another thread that my friend's son is the same way. He was four when diagnosed, is now 13, and has no symptoms when glutened other than not growing properly. It's scary, but possible. 

[cintinative]

Well, I never replaced my kitchen aid, but I did clean it thoroughly and used toothpicks to clean all the cracks.  It never occurred to me that the flour could get inside the mechanism and then come out again? 

I wonder what else I have been missing all these years?  

I buy tons of parchment paper from Costco because I use it to line pans and for the counter when I am working.  It helps me to feel better about potential crumb issues and besides that, gluten-free flours are so fine and prone to go everywhere, the parchment really helps me with cleanup.  

[ktgrok]

10 minutes ago, cintinative said:

 

I mentioned in another thread that my friend's son is the same way. He was four when diagnosed, is now 13, and has no symptoms when glutened other than not growing properly. It's scary, but possible. 

I'me very curious to see if DS has a big growth spurt. I just saw the disaccharide analysis from his biopsy, the only enzyme at normal levels was lactase (maybe because he breastfed until he was 4 yrs?), everything else was low. So he's definitely not absorbing nutrients properly. 

[cintinative]

1 minute ago, Seasider too said:

https://www.allergicliving.com/2014/07/02/are-spices-safe-for-a-gluten-free-diet/

That article pretty much sums it up. As with all products, look for clear labeling and if necessary call the manufacturer/distributor. 

I personally do not use seasoning blends anymore ever because I don’t think there’s anyway to really know exactly what all those ingredients are, the ones I can’t pronounce. Thankfully with the Internet, there are good seasoning blend recipes at our fingertips.

Thank you. I don't buy spice blends and I have rarely (but have) seen a spice such as thyme say "may contain wheat." 

Once I bought a box of cornstarch that said on the front "Corn Starch 100% pure" and on the side it said "May contain wheat."  I think their food chemist needs to be fired.  LOL

[Junie]

4 minutes ago, cintinative said:

Thank you. I don't buy spice blends and I have rarely (but have) seen a spice such as thyme say "may contain wheat." 

Once I bought a box of cornstarch that said on the front "Corn Starch 100% pure" and on the side it said "May contain wheat."  I think their food chemist needs to be fired.  LOL

The "may contain wheat" indicates that the product was on shared equipment during processing/packaging.

[cintinative]

Just now, Junie said:

The "may contain wheat" indicates that the product was on shared equipment during processing/packaging.

 

You may be right, but if there are any particles of wheat in the cornstarch, IMO it is not correct to label it 100% pure.

[ktgrok]

well, and I realized that it's very possible, nay, likely that my sugar and cocoa and baking powder and stuff are contaminated. I got rid of those. And realized I hoard corn starch. I had one open and two unopened containers, lol. 

 

Edited February 2, 2019 by Ktgrok

[Jean in Newcastle]

1 hour ago, Ktgrok said:

I'me very curious to see if DS has a big growth spurt. I just saw the disaccharide analysis from his biopsy, the only enzyme at normal levels was lactase (maybe because he breastfed until he was 4 yrs?), everything else was low. So he's definitely not absorbing nutrients properly. 

Dd, who was not diagnosed until she was 16, has grown an inch in the past year despite being so “old”. She had stopped growing at age 12. 

[nevergiveup]

You might find these interesting:  https://www.ncbi.nlm.nih.gov/pubmed/30230372

https://www.celiac.com/articles.html/journal-of-gluten-sensitivity/journal-of-gluten-sensitivity-autumn-2014-issue/the-cross-contamination-myth-buster-r3770/

[cintinative]

3 hours ago, nevergiveup said:

You might find these interesting:  https://www.ncbi.nlm.nih.gov/pubmed/30230372

https://www.celiac.com/articles.html/journal-of-gluten-sensitivity/journal-of-gluten-sensitivity-autumn-2014-issue/the-cross-contamination-myth-buster-r3770/

 

I'm sorry to say that my son HAS gotten glutened at a pizza place with a dedicated gluten-free prep area. I completely disagree with their statements in this article. You CAN get glutened at a pizza place. It may not involve flour in the air (although I would like to see their studies showing that the amount of flour is negligible).

The 20 ppm standard allows for some possible cross-contamination but it is not the standard by which all Celiacs should prepare their food.  

This is a comment on the post and I completely agree. My son is very sensitive to even small amounts of gluten:  "I think this is a generalization depending on how sensitive the person is to the gluten. I think making a generalization like this is the problem and why most people get sick in a home or public setting. I think these generalizations are the problem with the doctors, non celiacs and celiacs, there is so much judgement and assumption with out knowing how it impacts the people who are impacted by what their celiac is. I think it is great that you did some math on it but I think this is your experience and not the experience of others. I am super sensitive and these opinions would set me up for a 3 month health issue. I would not call this a myth-buster I would call this your experience with your struggle."

Here is a counter to the article that I think should be read:  https://tastymeditation.wordpress.com/2016/08/23/the-cross-contamination-myth-buster-busted/

[ktgrok]

That second article also seems to confuse killing bacteria with removing bacteria. Totally different. If you boil something you can kill it, but it doesn't mean it isn't still there. It's there, just dead. With gluten, I'm not sure how high it has to get to be denatured but I know it's higher than boiling given that cooked pasta still has gluten, lol!

So boiling gluten to remove is about the dumbest thing I've heard, and makes me doubt whatever else he's trying to say. Maybe he knows math, but he sure doesn't know biology. 

[Faith-manor]

3 minutes ago, Ktgrok said:

That second article also seems to confuse killing bacteria with removing bacteria. Totally different. If you boil something you can kill it, but it doesn't mean it isn't still there. It's there, just dead. With gluten, I'm not sure how high it has to get to be denatured but I know it's higher than boiling given that cooked pasta still has gluten, lol!

So boiling gluten to remove is about the dumbest thing I've heard, and makes me doubt whatever else he's trying to say. Maybe he knows math, but he sure doesn't know biology. 

You would be surprised how many "experts" do not understand the fundamentals of kitchen chemistry.

There are some GF only bakeries popping up around the country, and macrons are one of the most fun things they make. It's a French "cookie", but it comes in a ton of flavors. They look great on trays for parties as they tend to come in a lot of colors as well. So you might want to google for your state and see if you have one.

My son in law is allergic to wheat and dairy. This past Christmas vacation we were able to find a GF bakery in Huntsville, AL. We got a birthday cake for grandson. OH MY WORD IT WAS AMAZING! I paid $40 so it wasn't a cheap endeavor, but since they rarely have desserts at their house, and with my wheat allergy I also don't get it that often, it was worth it. I hope you can find one within a reasonable distance.

Sometimes getting special cookie or brownie when having to embark on such a life altering dietary restriction can help ease the pain.

[nevergiveup]

I am neutral on this subject but the author of the second article seems to have celiac disease himself and is {I believe} an orthopedic surgeon.

To address the pizza question, he stated in the article that one has to give the benefit of the doubt to assuming they are not cross contaminating with the toppings.  No telling how your pizza place handled things, Cintinative--obviously they did not handle things well, but does this mean that all pizza places offering gluten free are suspect?  He did not state it was not possible to be exposed at pizza places. 

I also believe he likened e coli with gluten simply to show that we are not afraid to use utensils that have been exposed to e coli as long as we clean them and as long as we clean something exposed to gluten we should be fine--boiling water was just an added measure of cleaning.

[ktgrok]

17 minutes ago, nevergiveup said:

I am neutral on this subject but the author of the second article seems to have celiac disease himself and is {I believe} an orthopedic surgeon.

To address the pizza question, he stated in the article that one has to give the benefit of the doubt to assuming they are not cross contaminating with the toppings.  No telling how your pizza place handled things, Cintinative--obviously they did not handle things well, but does this mean that all pizza places offering gluten free are suspect?  He did not state it was not possible to be exposed at pizza places. 

I also believe he likened e coli with gluten simply to show that we are not afraid to use utensils that have been exposed to e coli as long as we clean them and as long as we clean something exposed to gluten we should be fine--boiling water was just an added measure of cleaning.

Meh, I'e known some dumb doctors. 

And the difference is that if there is still e coli on my cutting board, it is at least DEAD e coli and won't hurt me. Versus gluten where if it is there, it is there. Its just totally different and a poor argument. 

Now, the first article was helpful and actual science, although I wish they had explained HOW they washed things (how long, temperature of water, soap, etc). It did make me feel better though!

[cintinative]

1 hour ago, nevergiveup said:

, Cintinative--obviously they did not handle things well, but does this mean that all pizza places offering gluten free are suspect?  He did not state it was not possible to be exposed at pizza places. 

 

We have eaten at the restaurant and not been glutened and eaten there and been glutened. When we were glutened, we called and they disassembled the entire prep area to deep clean it. I have no idea how we got glutened. Someone could have prepped a regular pizza in the GF area.  I am having a hard time believing this particular author speaks from a place of scientific fact so I won't touch on whether it matters if he thinks it is possible to be exposed. If we followed his way of thinking, my son would be continuously sick. 

[HollyDay]

Dd tested high enough in the bloodwork that the doc said we could stop testing there.  She also tested really (I mean really) allergic to malt.  I started researching malt allergy and there is a hefty gluten crossover with that one. 

Soy sauce often contains gluten.

be careful with products such as shampoo, makeup, lotions, etc.  Many beauty products and lotions contain gluten and/or wheat germ type ingredients

Be cautious with things like Rice Dream.  If that is a product you use, google it and see what you think. 

I have one dd (the one who tested positive) with some crazy allergies.  Onions will make her throat start to feel like it is closing up and her face itch. Another seems to have a threashold.  SHe can tolerate some soy sauce in a stir fry recipe, but a slice of bread would be too much.  Now, I do buy gluten free soy sauce by the way

Dh can eat whatever he wants.

I might be able to tolerate a slice of long rise sourdough every once in a while (like once or twice a week) but more often causes problems

[Monica_in_Switzerland]

As I've mentioned, our story is a positive blood test, but negative biopsy.  So I treat DS and gluten intolerant, but not necessarily celiac.  

Having said that, I do give food that does not have gluten/wheat products in the ingredient list, even if they are not "gluten free" certified.  I didn't start doing that until he'd been completely gluten free for a couple of years.  

 

For pizza:  I find most crusts to be pretty sad.  BUT, my ds loves using gluten-free English muffins (freezer section of large US grocery stores) as a base for mini-pizzas.  These are fun because each family member can make his/her own.   

I hope, as your ds's symptoms improve, his palate will also expand.  I would not be surprised if he is more willing to try things as time goes on and his system calms down!