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"But You Can Eat Whole Wheat, Right?"


earthtoneNJ

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miles2go Contributor

And there are a few mustards (I've seen them at Safeway) that have wheat starch. Always read the label. :)

Tiffany, so adorable! Are you getting any sleep? Congrats!

Margaret


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munchkinette Collaborator

The question I always get in restaurants is whether I can still eat rice. Sometimes potatoes. I think this must be from having a lot of low carb diet customers.

Actually, my worst experience was with dairy questions. I went to a restaurant with a friend who has to be very strict about that. He asked about whether the meatballs contained dairy. The waiter said yes, there is dairy. The meatballs have eggs. (We looked at each other confused.) We asked again if there was dairy. Again, he said yes, there is dairy. "Eggs are dairy. Some people consider eggs to be dairy."

We seriously didn't know what to say.

Skylark Collaborator

Those cow eggs get really big and tasty.

Juliebove Rising Star

I haven't seen gluten in mustard. What is in mustard that has gluten or what kinds are "Gluten laden"?

I have but I can't remember the brand. It was in a restaurant. I believe it had wheat in it.

Juliebove Rising Star

The question I always get in restaurants is whether I can still eat rice. Sometimes potatoes. I think this must be from having a lot of low carb diet customers.

Actually, my worst experience was with dairy questions. I went to a restaurant with a friend who has to be very strict about that. He asked about whether the meatballs contained dairy. The waiter said yes, there is dairy. The meatballs have eggs. (We looked at each other confused.) We asked again if there was dairy. Again, he said yes, there is dairy. "Eggs are dairy. Some people consider eggs to be dairy."

We seriously didn't know what to say.

I used to think that too because in so many grocery stores they are located in the dairy department. At least they used to be. These days they are usually in a separate place.

ravenwoodglass Mentor

Another post reminded me of this. I have recently gone back to college. I started with a math class. I got glutened right before the final. The D was over by Monday so I went to class anyway. The woman in the seat next to me noticed I was not my usual answer every question self and my mood was frankly awful. After break we were talking as the instructor was walking by. I mentioned to her that I had gotten into some wheat and the effects were getting me. (She knew I am celiac as we had talked about when she saw my med ID tag) The instructor whipped around and with a puzzled look on his face said "How and why did you manage to smoke some weed in a 10 minute break!" I then of course explained that I said 'wheat not weed' and we talked about celiac after class. Good thing too as I really did bad on the final, thank you brain fog but still managed an A- in the class.

danaf617 Explorer

Actually, my worst experience was with dairy questions. I went to a restaurant with a friend who has to be very strict about that. He asked about whether the meatballs contained dairy. The waiter said yes, there is dairy. The meatballs have eggs. (We looked at each other confused.) We asked again if there was dairy. Again, he said yes, there is dairy. "Eggs are dairy. Some people consider eggs to be dairy."

We seriously didn't know what to say.

I just asked this question last week. Why is it that my brain associated eggs with being dairy? :lol:


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celiac-mommy Collaborator

This thread has made my day. I can't stop laughing.

Earlier this year we had to travel up to South Carolina to visit the BIL in Greenville. One morning we were stuck eating at a Waffle House. Not my choice but DH was starving. I carefully ordered eggs and bacon, explaining I'm "allergic" to wheat. I've found most people know what allergy is so that's what I say.

Me: Two eggs, over easy, bacon - and NO BREAD. I'm allergic to wheat.

The waitress: No bread?

Me: No, I'm allergic to wheat.

The waitress: Oh well then, we also have white and rye bread. That should be okay.

:lol: :lol: :lol:

When we go to a restaurant for breakfast, I just tell them "no bread because the kids are allergic to bread" No questions are ever asked!

Everyone seems to think my kids can eat graham crackers. Smores are a popular dessert for family members to serve my kids cuz they 'must' be able to eat graham's--they're not made with wheat....

There's a neat little crepe bar by our house and I went in one day to see if they had anything dairy free.

-They said no, but proudly stated that they do have a great gluten-free crepe batter.

-I asked if they cook all the crepes on their 1 giant crepe stone and they said yes. -I said, "So once you cook them on that stone, they're no longer gluten-free...?"

-I got the deer in the headlights look.

-I told them once they gluten-free batter hit that stone, they were no longer gluten-free and I hope they weren't advertising their product as gluten-free because they could really get someone sick!

-Again, deer in the headlights

:unsure:

MissyJoy Rookie

I just asked this question last week. Why is it that my brain associated eggs with being dairy? :lol:

I just read the above post about eggs not being dairy too and was asking myself this same question! I won't think of eggs as dairy anymore though, now that I have a visual of a big cow laying an egg.... It's funny. I don't even know why I thought eggs were dairy. :blink: At least I know that wheat is wheat, and bread is made of wheat!

GlutenFreeManna Rising Star

I just asked this question last week. Why is it that my brain associated eggs with being dairy? :lol:

Most eggs are in the dairy case, that's probably why people make this mistake. I can actually remember getting milk in glass containers and farm fresh eggs from my great grandmother's farm delivered every week. Customer's getting milk and eggs delivery were the bulk of their business and they came in a car with the word "DAIRY" in big bold letters on the door. I think the two have just always been associated in agriculture and that's why they are in the same section in stores too. One time I even saw a coupon that was good for anything from the Dairy department. It had a picture with milk, eggs and cheese on it. Of course eggs are not technically dairy, but the coupon was good for them. I'm not saying I think eggs are dairy, but it's understandable why some people make that mistake. I bet if they stopped to think about it they would know that eggs come from chickens and not cow's. They just might have a wrong definition of the word "dairy". Of course I'm sure if we went around telling people we had a milk allergy, we would get some people that would ask if we can still eat cheese. So it's not an association problem for everyone. :P

Traveller Rookie

After my gluten-free steak came covered with deep-fried and breaded onion rings the waitress said "We'll take the onion rings off and put the steak on the grill to burn the gluten off"

LauraBeth Rookie

After my gluten-free steak came covered with deep-fried and breaded onion rings the waitress said "We'll take the onion rings off and put the steak on the grill to burn the gluten off"

That's is insane that anyone could think that! What did you say to her?

munchkinette Collaborator

After my gluten-free steak came covered with deep-fried and breaded onion rings the waitress said "We'll take the onion rings off and put the steak on the grill to burn the gluten off"

This brings up an interesting point. At what temperature does the protein denature? I had a friend who could eat deep fried stuff. I just don't know how. I definitely can't eat deep fried wheat. She claimed it was because the protein denatured. She had a PhD in cell/molecular biology. She clearly isn't as sensitive as everyone else.

K8ling Enthusiast

This brings up an interesting point. At what temperature does the protein denature? I had a friend who could eat deep fried stuff. I just don't know how. I definitely can't eat deep fried wheat. She claimed it was because the protein denatured. She had a PhD in cell/molecular biology. She clearly isn't as sensitive as everyone else.

I do believe it is 650 F but I am not entirely sure

psawyer Proficient

My understanding is that gluten can be destroyed by heating to at least 650F throughout and then holding for at least thirty minutes. Any food you did that to would no longer be edible and would be full of newly created carcinogens. Bon appetit! :blink:

miles2go Contributor

Is this person saying that because the proteins are denatured there is no possible IgE response? Because if you think about it, most egg protein is denatured at a much lower temperature and yet you find people everywhere eating cooked eggs, yet still with allergies to that situation. With the protein and all. Denatured.

K8ling Enthusiast

My understanding is that gluten can be destroyed by heating to at least 650F throughout and then holding for at least thirty minutes. Any food you did that to would no longer be edible and would be full of newly created carcinogens. Bon appetit! :blink:

SO true. I think this was more referring to grill grates and the like. I dunno. I personally still would not eat it.

psawyer Proficient

SO true. I think this was more referring to grill grates and the like. I dunno. I personally still would not eat it.

Yes. This is a suitable treatment for grill grates and cast iron cookware to clean them. A self-cleaning oven will reach and hold this temperature. I'm not so sure about the barbecue getting that hot. And fer sure, it won't work with food. icon8.gif

Skylark Collaborator

This brings up an interesting point. At what temperature does the protein denature? I had a friend who could eat deep fried stuff. I just don't know how. I definitely can't eat deep fried wheat. She claimed it was because the protein denatured. She had a PhD in cell/molecular biology. She clearly isn't as sensitive as everyone else.

If it's "cooked" and has changed texture, it's denatured. Your friend with the Ph.D. probably has a true allergy. Either that or she has not done her reading on celiac.

In true allergy, the immune system tends to recognize the surfaces of folded proteins. Heat can sometimes change the shape of an allergen through denaturation (unfolding) or aggregation (clumping) to the point that the antibodies don't recognize it. In celiac, we are sensitized to digested fragments of gluten, not the whole protein. It doesn't matter whether it's denatured or not. Your gut digests raw or cooked/denatured gluten into small peptides and the celiac-provoking gliadin peptides are released either way.

It would take extreme conditions, like acid hydrolysis or outright burning, to break down gluten to where it's not a problem for celiacs.

afreeclimber74 Rookie

Me- I'd like to order off the gluten free menu. I'll have the steak.

staff-what side do you want: veggies, potato pancakes, side salad...

Me- are the potato pancakes gluten free?

staff- no

Me- I'll have the veggies then

staff- do you want bread with your meal?

Me- (puzzled) no. I am ordering off the gluten free menu. My meal has to be gluten free.

staff- okay.

(a while later)

staff- here you go (laying down my plate that's covered in fried onion rings)

Me- I can't eat this. My meal had to be gluten free. Besides, I didn't even ask for onion rings.

staff- oops

munchkinette Collaborator

If it's "cooked" and has changed texture, it's denatured. Your friend with the Ph.D. probably has a true allergy. Either that or she has not done her reading on celiac.

In true allergy, the immune system tends to recognize the surfaces of folded proteins. Heat can sometimes change the shape of an allergen through denaturation (unfolding) or aggregation (clumping) to the point that the antibodies don't recognize it. In celiac, we are sensitized to digested fragments of gluten, not the whole protein. It doesn't matter whether it's denatured or not. Your gut digests raw or cooked/denatured gluten into small peptides and the celiac-provoking gliadin peptides are released either way.

It would take extreme conditions, like acid hydrolysis or outright burning, to break down gluten to where it's not a problem for celiacs.

I'm not sure what her deal was in terms of food. I knew she couldn't possibly have celiac if she could get away with something like that. (I'm only moderately sensitive, and I'd be in bed for a week if I did that.) I guess I was thinking of something along the lines of maybe only the 2nd, 3rd, and 4th structures got denatured, but the polypeptide stayed in tact. Or something along those lines, where it only got partially denatured. I'm not how hot deep fryers are, but I'm thinking about 300 degrees? 350? Like you said about the fragments- I haven't actually read up on those things since before I went back to school for biology, so I have to admit I can't even remember what the fragments are.

GlutenFreeManna Rising Star

This isn't really about gluten but I was ordering from the gluten free menu and I don't think they took me very seriously:

Me: I'm ordering off the gluten free menu, would you please make sure that my order is safe (second time I have mentioned the gluten free thing to the waiter BTW)

Waiter: Okay, what can I get you?

Me: I'd like a burger with no bun, it needs to be gluten free, and fries, they need to be made in a dedicated fryer so they are gluten free.

Waiter: Do you want cheese and bacon on your fries?

(restaurant was crowed and noisy and I only heard something about bacon.)

Me: What? No, NO BACON. I'm Allergic to Bacon! DO NOT give me anything with bacon.

Waiter: Nods his head at me and then turns to take my husbands order.

He asks my H the same question. My husband declines the cheese and bacon as well. At that point I realize it was something about cheese and bacon and I try to tell him again I DO NOT want any cheese or bacon on my fries, they need to be gluten free (who knows what's in the cheese sauce) and that is not on the gluten free menu. Waiter dude nods at me and walks away.

Order arrives and my fries have cheese and bacon on them. :angry: The waiter is no where to be found. I'm starving, so my husband who doesn't have a bacon allergy takes my fries and gives me his (all of the fries are supposed to be made in a dedicated fryer so they should have been safe. When the bill comes I see why he was trying to get us to add cheese and bacon. There is an extra charge for it. He was upselling to increase the bill. Well it didn't work, he just decreased his tip by at least that much. I got very ill (probably from some gluten cc in the fries or the burger) later and the rest of our evening was ruined. Won't be returning there anytime soon.

mushroom Proficient

So we go to Carino's where they have a gluten free menu, (2:30 p.m.) s l o w, and I ask, I suppose it's too much to hope that with a gluten free menu you have a gluten free beer? Blank look, very blank.... and he says, I don't think we have any alcoholic drink that is gluten free :blink:, so I says, well, how about wine for starters?? Another blank look. He'd obviously never had a gluten free customer before, nor been trained in the basics. We both managed to order gluten free drinks :D We both decide to order caesar salads, me with chicken and without the tomatoes (tomatoes in caesar??? anyway), dh with artichoke hearts. We had to convince him three times not to bring the bread, and he finally asks, "So if I leave the croutons off the caesar salad that's gluten free??" I said, very gently under the circumstances, yes, in this case that's right :lol:

anabananakins Explorer

My favourite french seed-y mustard had wheat in it. There's another brand I found to replace it but it's kind of bland tasting. Oh well.

I have loved reading these posts!

GirlScout Newbie

Is it too early in the morning for wine? I'm new, and will be doing another post, but my moment just happened with my husband... just now.

Me: Wow, it says here that "every crumb could matter". Maybe that's why I was in so much pain last night? (We share all surfaces, as well as butter, mayo... I try to keep crumbs out.)

Hubby: Oh well that's not you, your probably not that bad... I doubt you're that sensitive...

(really are you a Dr or specialist? ARG)

Me: Well you just ate a bagel so I'm not going to kiss you. ;)

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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