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"But You Can Eat Whole Wheat, Right?"
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When I tell them chicken, beef vegetables, fruit. It is inevitability followed by them saying how much they would rather die than have to eat like I do. :o

And sadly, they probably will die from eating the way they do... diets filled with pseudo-food. :(

When did it become such a crazy notion to eat whole, unprocessed foods?

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Jerk. Good thing my hillbilly butt wasn't there when he said that to you.

Yea really, in my younger and more volatile prediagnosed days I would have backed him up to a wall and lit into him. I did have quite the temper then and little ole 100 lb me could back down even the biggest guy. Noone messed with me and as my ex used to say when my eyes spit fire it was time to walk away, real quick. Now you really have to work to get me mad. That guy came real close though.

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I've had a few folks recently tell me that "a little wheat won't kill you." So, I've politely offered to eat the wheat, but ONLY if they would politely spend the night with me and read me stories while I spend an entire evening on the toilet with "D." While it may not kill me, they will most certainly want to die after an evening spent with me trying to de-gluten myself :P

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I've had a few folks recently tell me that "a little wheat won't kill you." So, I've politely offered to eat the wheat, but ONLY if they would politely spend the night with me and read me stories while I spend an entire evening on the toilet with "D." While it may not kill me, they will most certainly want to die after an evening spent with me trying to de-gluten myself :P

I would respond that a little bit of e.coli in their food (probably) won't kill them either, but would they eat something they knew had e.coli and would give them symptoms of food poisoning? People need to understand that it's not like this is just a fad health diet, were we can eat gluten "in moderation". Gluten is the same thing as poison to us.

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I would respond that a little bit of e.coli in their food (probably) won't kill them either, but would they eat something they knew had e.coli and would give them symptoms of food poisoning? People need to understand that it's not like this is just a fad health diet, were we can eat gluten "in moderation". Gluten is the same thing as poison to us.

I have one of those friends who picks and chooses as far as gluten-free. She knows she gets sick if she eats a lot of wheat but apparently she's not sensitive enough that she can't have a cookie here or there. She's celiac negative and probably just a little allergic.

To her credit, she did bring a wonderful gluten-free pasta salad to my pot luck along with some normal wheat cookies for all the glutenoids. It was good and made carefully enough that I did not get CC'd. :)

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I have one of those friends who picks and chooses as far as gluten-free. She knows she gets sick if she eats a lot of wheat but apparently she's not sensitive enough that she can't have a cookie here or there. She's celiac negative and probably just a little allergic.

To her credit, she did bring a wonderful gluten-free pasta salad to my pot luck along with some normal wheat cookies for all the glutenoids. It was good and made carefully enough that I did not get CC'd. :)

I know someone like that too. She was diagnosed with DH, so she has celiac, but she doesn't have any other symptoms. She does eat gluten free when she's on her own, but if she goes to a party and people offer her a cookie she will eat it. She doesn't mind having a rash occasionally and would rather deal with the DH later instead of "being rude". I have tried explaining that even if she doesn't have gastro problems now she could be damaging her body by eating gluten and she doesn't want to hear about it. Calls me rude for either not going to a party where I won't be able to eat anything or going and turning down food or insisting I bring my own food. I'm no longer friends with this person. That type of thinking makes me crazy. I guess everyone is allowed to choose what level of vigilance they are comfortable with but I can't help but think that people like that are the reason people with more severe reactions are given such a hard time. It's why we often see threads on here where friends ask "A little bit of wheat won't hurt you, will it?" or family members slip some flour into a gluten-free meal to "test" if we really get sick or this is all in our heads.

Now don't get me wrong, I don't mind at all if people decide to be gluten free just because they think it's healthier or something (hey, the more people eating gluten free the more products will hit the market and the easier things will be!) BUT I wish those people would be clear when talking to others they are CHOOSING to eat that way for most of their diet and some people don't have any choice. For people with celiac or gluten intolerance gluten is poison, not something we are JUST choosing to avoid.

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For years after I became vegetarian my grandmother would ask my mom why I wouldn't eat chicken salad -- "that's a salad, isn't it?" I think she really was trying hard to find things for me to eat but that comment always made me laugh.

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For years after I became vegetarian my grandmother would ask my mom why I wouldn't eat chicken salad -- "that's a salad, isn't it?" I think she really was trying hard to find things for me to eat but that comment always made me laugh.

Oh my. Reminds me of that scene from "My Big Fat Greek Wedding?"

Tulla: "Aunt Voula, he doesn't eat meat."

Voula: "He don't eat no meat? WHAT DO YOU MEAN HE DON'T EAT NO MEAT?"

**Everyone stops and stares**

Voula: "Oh, it's okay. I make lamb."

**Party continues**

:huh::lol:

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Too funny! I am constantly amazed at how ignorant people are about what is in their food, and how many people don't cook. I ALWAYS cooked my own food and knew what was in it, even before I realized I had celiac.

As I sit everyday at work and eat my delicious gluten free food that I prepared, my coworkers are eating those boxed up lunches (Healthy Choice -yeah right!). One of my coworkers swears when she wins the lottery she will hire me as her personal chef to cook dinner every evening at her house!!!! I think this is so funny!

Wenmin

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These are all making me laugh. I was in Native Sun a few months ago, and I went to the counter to ask if a certain product was gluten free. The lady said, "no honey, gluten is mainly just in grasses". I didn't even respond. However, I do LOVE Native Sun, and they are Usually very well informed there.

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As I sit everyday at work and eat my delicious gluten free food that I prepared, my coworkers are eating those boxed up lunches (Healthy Choice -yeah right!). One of my coworkers swears when she wins the lottery she will hire me as her personal chef to cook dinner every evening at her house!!!! I think this is so funny!

Wenmin

When I have friends over for dinner, they generally don't notice the food is gluten-free. :lol: I made Costco pulled pork with a gluten-free barbecue sauce and served it with rice for the party. Someone commented on how different and good it was with rice instead of bread.

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I was watching a British comedy (can't remember the name) and the son announced that his girlfriend was vegetarian. The grandma then looked a bit confused then said brightly, "Can she have some of that ham if it's chopped up really fine?"

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When i was first diagnosed with Celiac, i was told by the gastros assistant of my disease, she was explaining to me exactly what it was, and how it was going to change my life, and she then she went on to say "you can't eat wheat anymore, but it's not that bad, you can still eat potato bread".

Well i went grocery shopping all excited thinking hey i like potato bread i picked up a loaf and read the ingrediants, i was shocked to see wheat! I can't believe a medical professional actually told me i could have potato bread!!

:blink:

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This thread is hysterical! My bf and I thoroughly enjoy every post. I read him the examples, and we both giggle.

My most recent duh moment was with my Grandmother (she's 80). We were there for a bbq last week, and she made deviled eggs. I love deviled eggs, but I had to ask questions about the ingredients she'd used. When she told me she used mustard, it threw up a red flag. I searched her fridge and sure enough, she had a bottle of gluten-laden mustard in there. When I said "sorry Grandma, there's gluten in the mustard," she replied "O it's just a tiny bit, you know, for flavor...that won't hurt you...." Yes it will Grandma. Next time I'm at the store I'll pick you up some gluten free mustard so next time I can enjoy all of your hard work! Grandma says "O that's just wasting money. Just eat one, it's only a tiny bit of mustard," and rolls her eyes.

I don't fault her. She's old. This is new. And my sister was in town for that dinner too, and she has Chrones Disease. Between the two of us and our diet restrictions, my "food pushing" Grandmother is not a happy camper while menu prepping. I wish she would just drop it when either my sister or I say we can't have x or y because of our diseases, but she still "food pushes", which stresses her AND us out! Ugh!

Not to bad though in the grand scheme of life. Her heart is in the right place. :)

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This thread is hysterical! My bf and I thoroughly enjoy every post. I read him the examples, and we both giggle.

My most recent duh moment was with my Grandmother (she's 80). We were there for a bbq last week, and she made deviled eggs. I love deviled eggs, but I had to ask questions about the ingredients she'd used. When she told me she used mustard, it threw up a red flag. I searched her fridge and sure enough, she had a bottle of gluten-laden mustard in there. When I said "sorry Grandma, there's gluten in the mustard," she replied "O it's just a tiny bit, you know, for flavor...that won't hurt you...." Yes it will Grandma. Next time I'm at the store I'll pick you up some gluten free mustard so next time I can enjoy all of your hard work! Grandma says "O that's just wasting money. Just eat one, it's only a tiny bit of mustard," and rolls her eyes.

I don't fault her. She's old. This is new. And my sister was in town for that dinner too, and she has Chrones Disease. Between the two of us and our diet restrictions, my "food pushing" Grandmother is not a happy camper while menu prepping. I wish she would just drop it when either my sister or I say we can't have x or y because of our diseases, but she still "food pushes", which stresses her AND us out! Ugh!

Not to bad though in the grand scheme of life. Her heart is in the right place. :)

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

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

I was wondering that myself. I've got Grey Poupon and Tabasco mustards in my fridge and both are safe.

This thread is hilarious and sad all at once. People are so ignorant. Luckily, I haven't had too much trouble. I spent the weekend with my husband's family for my sister-in-law's wedding, and other than fielding a lot of questions and having to order special foods, I didn't have problems (my sister-in-law and new brother-in-law are sweethearts and made sure to have the rehearsal dinner at a place with a gluten-free menu, made sure to let the management know that I was coming- food was delicious- and had gluten-free cookies for me and an uncle with celiac at their dessert reception). Husband's cousin is a naturopathic doctor and was so happy to hear that I didn't view celiac disease as a death sentence- apparently a lot of her patients freak out at the idea of having to cook everything and give up mainstream processed foods. I can't believe how many people don't cook for themselves.

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I was wondering that myself. I've got Grey Poupon and Tabasco mustards in my fridge and both are safe.

Mustards with beer in them. There are a few mustard sauce kinds of things out there, but I don't eat enough of them to remember if they are gluteny or not.

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

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

My Grandma is notoriously cheap! LOL! Her version was some cheap store brand and yes, it had "wheat starch" in it. I did a little research and it said wheat is sometimes added to mustard to adjust the texture. I also think it was a "deli style" (with the little brown flecks in it), which could have been the issue. But yeah, as others have said, always read the label. Mustard is one of those things I would have thought was always gluten free, but nopers! Read read read!

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The one that really got me upset was the woman who insisted she was feeding her toddler a gluten free diet while her toddler ate mostly cheerios for snacks.

Me: Cheerios have wheat in them.

Her: No they don't, they are oats.

Me: They have wheat starch listed in the ingredients and besides some celiacs react to oats.

Her: Well a little bit shouldn't hurt him. Afterall, the main ingredient is oats, not wheat. Besides cheerios are heart healthy, see it says so right on the box...blah, blah, blah...

Me: *Bangs head against wall and gives up.*

Oh my goodness I just had this conversation with my sons school! They said "well we gave him cheerios for snack"...When I said that they were not safe and he had to have chex instead, the administrator told me that I was overreacting!! After taking it to the owner, I got a letter of apology, a discount, and the promise that it will not happen again. It's so hard to make people understand!!!

Sometimes I REALLY hate people.

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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.

Me: No, no bread. It's all made with flour. Flour is all wheat and I can't eat it.

The waitress: Well glory be, I didn't know that. Hey Sue *waitress half way across the room* did you know bread is made from wheat?

Other waitress Sue: Really? Gosh, no Hon, never knew that before.

Me: *sitting twiddling thumbs waiting the dialog to end* Ahem, trust me, I can't have bread so please just bring my eggs and bacon.

I can only imagine what would have happened if I had mentioned celiac. :rolleyes:

I can't get over how ignorant most people are about what they put into their bodies. This instance was the funniest but it happens all the time. People seem surprised that wheat is in anything other than "whole wheat" products. I always love how waitresses ask, "White, wheat or rye" when taking orders. Duh, it's all wheat.

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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.

Me: No, no bread. It's all made with flour. Flour is all wheat and I can't eat it.

The waitress: Well glory be, I didn't know that. Hey Sue *waitress half way across the room* did you know bread is made from wheat?

Other waitress Sue: Really? Gosh, no Hon, never knew that before.

Me: *sitting twiddling thumbs waiting the dialog to end* Ahem, trust me, I can't have bread so please just bring my eggs and bacon.

I can only imagine what would have happened if I had mentioned celiac. :rolleyes:

I can't get over how ignorant most people are about what they put into their bodies. This instance was the funniest but it happens all the time. People seem surprised that wheat is in anything other than "whole wheat" products. I always love how waitresses ask, "White, wheat or rye" when taking orders. Duh, it's all wheat.

This was hilarious! I live in a small Texas town (and luckily not too far from a big city) and this is how people talk here. In the few instances that I've had to refuse food and briefly explain why I can't eat it, they always respond with, *insert texas twang* "well bless your heart sweetie, you must be so miserable without dumplins' and biscuits. come on by momma's house and i'll get you sumpin nice to eat." And by "sumpin nice" I'm sure it would involve gluten :blink: Those sweet ol' ladies!

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I guess I shouldn't have been as surprised as I was when I went to the grocery store. The cashier (maybe 16 or 17) asked me what I was buying since she didn't recognize the gluten free food. I told her that I was getting gluten free food because I couldn't eat wheat. She looked at me really confused. I said that I couldn't eat flour. She then said. Oh I've never heard of that (meaning that flour was made out of wheat.) This somewhat surprised me since the store is good and has a complete freezer case that is just gluten free food with a nice big sign over it. The best place to get it anywhere around.

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Took my daughter to Chick-Fil-A for toddler time.

Me: Are the french fries fried in the same grease that the nuggets? Or, do they have a dedicated fryer?

Worker: They have a dedicated fryer.

Me: Awesome, I'm just curious because some people are intolerant, or allergic to gluten and if they are all fried together than the french fries would be CC.

Worker: *dazed, confused look*

Me: Did that make sense?

Worker: Really? Some people are allergic to chicken nuggets?

Me: *hands in face laughing*. I'll just have an order of fries and a small water for this young lady.

Worker: Would you like to upgrade to a nugget meal for $2 more dollars?

Me: No thanks.

Was it wrong that I never corrected him on people being allergic to chicken nuggets? :P

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Forgot to mention that at a local food fare where there was some serious sampling of Maine organic food products...

Me: I can't eat wheat.

Them: Weed?

Me: No, wheat.

Them: Meat? No?...

Me: [next food vendor?]

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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