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Wow, People Really Don't Get It...


samcarter

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psawyer Proficient

This may help.

A list of companies that has a clear gluten policy. If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc." Open Original Shared Link This makes shopping MUCH easier.


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  • Replies 76
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SiouxsieKim Newbie

I agree the most common one is "But a little bit won't hurt, will it?" or "surely you can cheat just this once" as though its just a weight loss diet I'm on! They don't realise the damage a little bit of gluten can cause.

But if people care and they want to know what its about they will go out of the way to find out. My boyfriend read a book by a dietician about gluten sensitivity and pretty much diagnosed me before the doctors did. He's so sweet that when we go shopping he reads every single label of the food items he picks up! Even my parents, who I thought wouldn't take it seriously, made the effort to look it up on the internet and to make me a gluten free meal when I went to visit. I think they were just glad I'd found something that worked after all these years of suffering!

Eating out is the hardest though. If you tell a waiter that your allergic to wheat (which is the only thing they understand) they look at you gone out and ask what foods you can't have. They work in a restaurant and don't know what foods contain wheat!

Yellow Rose Explorer

Two weeks ago I went to an all day training that included lunch. I asked what lunch was and was told oh we just order a box sandwich lunch from the deli. I told the woman I can't eat wheat and she offered to get me a salad. I asked for the dressing to be put on the side and no crutons. I was starving by the time lunch came around. Of course there was donuts, muffins, and pastries of every assortment to be had. Lucky for me there were also grapes. My salad arrived covered in crutons. That will be the last time I don't bring my own food. Like Scarlett said, " I'll never be hungry again!!" ;)

ang1e0251 Contributor

It does me so much good to read these posts. I have been eating gluten-free for 10 months and have probably had every reaction you have all described!

I finally made up my mind that I will never go to a function without taking my own food. I will never attend a party & be ashamed to ask about the ingredients, but still take my own food. I will definately never attend a family function, except with my Mom who is great about it, and not take my own food.

I decided if I were diabetic, as some family members are, I would never be ashamed to ask the contents of food I might eat. I have a disease and protecting myself against poisoning must be a priority that I am not embarassed about. I am not responsible for other people's ignorance.

Treen Bean Apprentice

I actually love educating people about what gluten is. Most people are very receptive and interested. In fact, they get really excited when the find something labeled Gluten Free and always call me to tell me about it and ask if I want them to buy it for me!

I have gotten some comments that maybe I'll outgrow this. And, some people do make me feel like a completely pain in the butt, but those who really love me are trying very hard.

I think the funniest comments I have gotten were: "Oh, I have a friend who can't eat gluten. She's a .... necropheliac." and

"This young lady can not eat wheat. She has a glutton allergy." (Yes, ladies and gentlemen, I am allergic to fat people!)

Treen Bean

gluten-free 2 years!

ang1e0251 Contributor
You're exactly right! AND I get so tired of seeing the words "natural flavors" on everything without any further information :o .

You are so right, Robin! I called about throat drops I reacted to & was told "natural flavors" was a propriotory formula. She wouldn't tell me what was in it. So now I don't know why I reacted. If I had gone into shock maybe then they would "disclose".

Angie in Indiana

  • 2 weeks later...
henny Explorer
Sometimes I wish poisoning was not such a serious felony!

(except the apparent case of gluten!!!! which can be done with complete immunity)

this is a GREAT point!

From now on I will tell these rude people "Gluten is essentially a poison for me" and that ought to help them understand the seriousness of the situation.


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CMCM Rising Star

Most people do not care about or read ingredient labels. Most have zero idea what gluten is! Once in a restaurant I asked if a veal dish had any gluten product in it. She went to ask the chef, and came back telling me "No, it doesn't have gluten, it is only breaded with white flour."

I'm reminded of my mother-in-law, who when we told her our son is allergic to peanuts, she said "But can he have peanut BUTTER?".

When out, I ask about the inclusion of wheat and then progress to the more specific gluten if the people seem knowledgeable. I get them to tell me what was added in preparation. And many restaurants have become knowledgeable about gluten lately, so that's good.

As for friends/family offering gluten items, it's not hard to decline. If they don't like my explanation, that's their problem!

Breila Explorer
Hahahahahaha!! Thats like saying to a person with a peanut allergy.."I use smooth not crunchy" hahahahaha.....

I remember reading somewhere (I think it was an EMT's blog) about a woman they picked up in the ambulance who KNEW she had a peanut allergy, but thought smooth peanut butter was okay. Geesh.

I half jokingly told my son the other day that I was just going to start telling restaurant people that he had a bread and pasta allergy so they'll stop offering me the white bun.

In the year since he was diagnosed I've heard them all:

From a friend's mom: "He can have the cookies I made today, I made them with white flour"

From my FIL: "Cobblestone Mill Sourdough bread is gluten free, I have problems with wheat and it doesn't bother me."

From restaurant employees (twice): "So, you want the white bread bun?"

From another mother: "So, he can't have any peanuts?" (at least she was trying)

And then there's my MIL, who absolutely does not get CC issues and feels the need to comment on the fact that I have 2 toaster ovens every.single.time she visits.

lizard00 Enthusiast
And then there's my MIL, who absolutely does not get CC issues and feels the need to comment on the fact that I have 2 toaster ovens every.single.time she visits.

My MIL doesn't get it either. We were at the beach about 6 weeks ago, and I told her I couldn't eat something. She said, "But you're on vacation."

Right. Cause my immune system goes on vacation, too!! I can't believe I didn't know that! :lol::lol:

  • 2 weeks later...
Veronica2 Newbie

Recently I got into an "argument" with an acquaintance who insisted I could eat her homemade bread "because I grind my own wheat and there's no gluten added to it." She insisted that bread does not have gluten in it if you make it yourself, and pointed to the fact that you can buy gluten separately as "proof" that it is added later to bread.

We went to Cheesecake Factory yesterday, and I asked our waiter if they had a gluten-free menu. He came back with a "free" to-go menu that I could take home with me. :rolleyes:

I did order their Godiva chocolate cheesecake (flourless crust) and it went down well :)

I never know whether to say I'm sensitive to gluten, wheat or flour because it seems saying just one results in blank stares!

MNBeth Explorer
We went to Cheesecake Factory yesterday, ...

I did order their Godiva chocolate cheesecake (flourless crust) and it went down well :)

I'm glad you didn't get sick, but I would be cautious about Godiva and Cheesecake Factory cheesecake, based on comments of other posters who have contacted the companies:

From Smiles, 8-28-08: I was not sure where to post this, but I contacted cheesecake factory because that is the food I will probably most miss and even though sugar is out of question for the moment with me, I would like to one day eat a cheesecake again....

Here is there response:

Thank you for your email!

Our Godiva Chocolate Cheesecake is gluten free. However, the pan that is baked in is sprayed with a pan release that contains a trace amount of flour.

From olalisa, 2-8-07: I went to their (Godiva's) website a while back and did the online chat with a person there who sent me their official statement that none of the chocolates are safe for someone with gluten intolerance. I wish I had copied it so that you could read it here, but it was pretty clear.

Just thought you might want to know.

Fiddle-Faddle Community Regular
Recently I got into an "argument" with an acquaintance who insisted I could eat her homemade bread "because I grind my own wheat and there's no gluten added to it." She insisted that bread does not have gluten in it if you make it yourself, and pointed to the fact that you can buy gluten separately as "proof" that it is added later to bread.

I hope you were able to convince her. If not, you might print out some info from the internet (and gently tell her that, although you appreciate her efforts and you know she would not intentionally make you ill, her misunderstanding could have had very bad consequences.

From Wikipedia:

"Gluten is a composite of the proteins gliadin and glutenin. These exist, conjoined with starch, in the endosperms of some grass-related grains, notably wheat, rye, and barley. Gliadin and glutenin comprise about 80% of the protein contained in wheat seed. Being insoluble in water, they can be purified by washing away the associated starch. Worldwide, gluten is an important source of nutritional protein, both in foods prepared directly from sources containing it, and as an additive to foods otherwise low in protein.

The seeds of most flowering plants have endosperms with stored protein to nourish embryonic plants during germination, but true gluten, with gliadin and glutenin, is limited to certain members of the grass family. The stored proteins of maize and rice are sometimes called glutens, but their proteins differ from wheat gluten by lacking gliadin. The glutenin in wheat flour gives kneaded dough its elasticity, allows leavening and contributes chewiness to baked products like bagels.

Although wheat supplies much of the world's dietary protein and food supply, as many as 0.5% to 1% of the population of the United States has celiac disease, a condition which results from an inappropriate immune system response to gluten.[1] The manifestations of celiac disease range from no symptoms to malabsorption of nutrients with involvement of multiple organ systems. The only effective treatment is a lifelong gluten-free diet."

Hope that helps your acquaintance before she poisons some poor celiac!

JNBunnie1 Community Regular
Recently I got into an "argument" with an acquaintance who insisted I could eat her homemade bread "because I grind my own wheat and there's no gluten added to it." She insisted that bread does not have gluten in it if you make it yourself, and pointed to the fact that you can buy gluten separately as "proof" that it is added later to bread.

We went to Cheesecake Factory yesterday, and I asked our waiter if they had a gluten-free menu. He came back with a "free" to-go menu that I could take home with me. :rolleyes:

I did order their Godiva chocolate cheesecake (flourless crust) and it went down well :)

I never know whether to say I'm sensitive to gluten, wheat or flour because it seems saying just one results in blank stares!

That's like saying lobster doesn't come from the sea, it comes from the kitchen.

My boyfriend said something mean about her that I can't really reprint here..... :)

MNBeth Explorer
She insisted that bread does not have gluten in it if you make it yourself, and pointed to the fact that you can buy gluten separately as "proof" that it is added later to bread.

Vivid evidence that a *little* knowlege can be dangerous!

Ms. Skinny Chic Explorer
Oh, I know. Plus celiac is new to the public, as far as awareness, and their generation (born during the Depression) is not as aware of it. My friend just loves to feed people; it's kind of how she shows love. If I give them something i've made, she feels she needs to reciprocate. She *always* has treats for the kids when they go over there, too.

people don't understand this is really a disease and not a allergy

kim:) Apprentice
So yesterday i took my kids with me to visit our neighbors (elderly, husband has MS and doesn't get out much, sweet, adorable people we love). The wife is always offering me something to eat--usually cookies or quick bread or something. They asked how I was doing and I just said I hadn't been feeling well lately, but had stopped eating wheat and noticed a big change, and that my doctor was okay with it (he did say that if it made me sick, to not eat it).

The husband seemed to understand, but the wife...well. She knows I love to bake and said, "Oh, that means you can't eat your own bread!" She then went on to advise, "I get this flour at the store, it's called "bread flour" and I bet you could use that, it's not wheat flour." I told her that all flour, unless it says otherwise, is made from wheat. She said, "really?" :o

Later she asked, "What about cookies, you can have cookies, right?" I said, no, not if they were made with flour.

Then she brought out a box of cranberry quick-bread mix (I think Krust-ease or something) and said, "Here, read the label, see if there's anything you can't have." I took it and pointed out, "Wheat flour, first ingredient."

Meanwhile her husband was just shaking his head in disbelief. :lol: She's not unintelligent, it's just I think honestly the general public doesn't understand that wheat is in practically everything. And it's not "Whole wheat" that's the problem (that's what she thought about the bread flour issue). There's just not anything out there that the average person hears about gluten intolerance or celiac.

She did also ask, "Well, just a little bit won't hurt you, right?" Her husband said, "Hey, if she's feeling good without it, she don't need to eat it!" :D

I know what you mean!!! I get asked the stupidest questions...can you eat fruit? wait you cant eat milk right? oh and my all time favorite... so you can only eat things with gluten in it?

haha just thought i would share.

darlindeb25 Collaborator

Perfect timing for this thread to reappear. Yesterday, one co-worker brought in homemade muffins. Another tells her how good they are and asks what's in them. So the first starts telling her the ingredients, and Lisa looks at me and says, "Whole wheat, so Deb can have them, right?" So I looked at her and said, "Yeah Lisa, I can have whole wheat, I just can't have little pieces of it!" <_< My boss' s wife turns to me and says, "Is that true Deb?" :huh: She's the one I honestly thought understood gluten free. I give up!!! It's been nearly 4 years now, and nearly everyday I have to remind them of the foods I can't have. Finally, I have to admit, they just do not care and will never understand.

DarkIvy Explorer

I generally expect that people will not be understanding, and that I'll have to defend my every (food) move for the rest of my life.

A few gems include:

"I thought you couldn't eat bread, so why are you eating that sandwich?" (In a nasty tone, too!)

"It's gluten free bread."

"What?! How do they even MAKE that?"

Luckily a couple friends jumped in at this point and helped me explain.

"You can't have gluten? Okay... let me go check with the chef and make sure this is sugar-free." and "But ice cream has SUGAR!!"

My response: "Gluten is not the same thing as glucose. Gluten is a protein in wheat, rye, barley and oats. I can have all the sugar I like, as long as there's no flour."

"Oh..."

My favorite story:

When I was flying to Hong Kong about a year ago, I was by myself and stuck in the longest part of the flight (from the States to Japan) next to this older guy who was flying to China to meet up with some woman. He was downright creepy, and told me I could lean on his shoulder to sleep if I wanted (er, no thanks!) and said many other weird things along the way. If I would start to read a book, he'd start chatting, so I had to pretend to be napping, or pretend to be watching the screen, or pretend to read WITH my ipod at full blast so he would think I couldn't hear him. Longest flight of my life, ugh!

Anyway, the snack cart comes by with pretzels, and they hand me a pack, which I hand back saying "sorry, I'm allergic."

Next thing I know, this dude is grilling me about what I can and can't have. He didn't believe that I was really unable to eat it, he thought I was on a "diet". When my special gluten free meals came around, he got really inquisitive and annoying. When his meals came around, he'd start offering me stuff, and it seemed like he was trying to test me. He'd offer me a roll, and I'd be like "I can't eat bread."

"Really?"

"Bread is made with flour, flour is typically made with wheat."

"Oh. Do you want my Oreos?"

"I can't eat them, either."

"Really? There's flour in this stuff, too?? I don't believe you."

"Then read the label."

"Oh, I guess there is flour in this. So then you can't have pasta?"

When the breakfast arrived (which I couldn't eat, naturally, as airlines loooove to serve everything in sandwich form) he started pestering me about the flour content of croissants. I don't honestly believe he was that dumb, I just think he was trying to test me. Again, he seemed set that I was just on some fad diet, and it's like he was trying to prove to himself that I actually did know what gluten was and what it was in.

Let's be real: it was the most miserable flight of my entire life. I probably should have asked to move, but the flight was packed and I never saw empty seats anywhere.

So next time some stranger starts to question your food choices, thank your lucky stars you are not stuck on a 14 hour flight next to that person.

debmidge Rising Star
Recently I got into an "argument" with an acquaintance who insisted I could eat her homemade bread "because I grind my own wheat and there's no gluten added to it." She insisted that bread does not have gluten in it if you make it yourself, and pointed to the fact that you can buy gluten separately as "proof" that it is added later to bread.

We went to Cheesecake Factory yesterday, and I asked our waiter if they had a gluten-free menu. He came back with a "free" to-go menu that I could take home with me. :rolleyes:

I did order their Godiva chocolate cheesecake (flourless crust) and it went down well :)

I never know whether to say I'm sensitive to gluten, wheat or flour because it seems saying just one results in blank stares!

The best way to explain "added gluten" is to say that some people are not contented

with the natural amount of gluten found in wheat, so they add more to it to make the

dough/baked goods much more elastic than natural. In all my years of baking

gluteny baked goods, I've never had to use "gluten" as an ingredient.

debmidge Rising Star
I generally expect that people will not be understanding, and that I'll have to defend my every (food) move for the rest of my life.

A few gems include:

"I thought you couldn't eat bread, so why are you eating that sandwich?" (In a nasty tone, too!)

"It's gluten free bread."

"What?! How do they even MAKE that?"

Luckily a couple friends jumped in at this point and helped me explain.

"You can't have gluten? Okay... let me go check with the chef and make sure this is sugar-free." and "But ice cream has SUGAR!!"

My response: "Gluten is not the same thing as glucose. Gluten is a protein in wheat, rye, barley and oats. I can have all the sugar I like, as long as there's no flour."

"Oh..."

My favorite story:

When I was flying to Hong Kong about a year ago, I was by myself and stuck in the longest part of the flight (from the States to Japan) next to this older guy who was flying to China to meet up with some woman. He was downright creepy, and told me I could lean on his shoulder to sleep if I wanted (er, no thanks!) and said many other weird things along the way. If I would start to read a book, he'd start chatting, so I had to pretend to be napping, or pretend to be watching the screen, or pretend to read WITH my ipod at full blast so he would think I couldn't hear him. Longest flight of my life, ugh!

Anyway, the snack cart comes by with pretzels, and they hand me a pack, which I hand back saying "sorry, I'm allergic."

Next thing I know, this dude is grilling me about what I can and can't have. He didn't believe that I was really unable to eat it, he thought I was on a "diet". When my special gluten free meals came around, he got really inquisitive and annoying. When his meals came around, he'd start offering me stuff, and it seemed like he was trying to test me. He'd offer me a roll, and I'd be like "I can't eat bread."

"Really?"

"Bread is made with flour, flour is typically made with wheat."

"Oh. Do you want my Oreos?"

"I can't eat them, either."

"Really? There's flour in this stuff, too?? I don't believe you."

"Then read the label."

"Oh, I guess there is flour in this. So then you can't have pasta?"

When the breakfast arrived (which I couldn't eat, naturally, as airlines loooove to serve everything in sandwich form) he started pestering me about the flour content of croissants. I don't honestly believe he was that dumb, I just think he was trying to test me. Again, he seemed set that I was just on some fad diet, and it's like he was trying to prove to himself that I actually did know what gluten was and what it was in.

Let's be real: it was the most miserable flight of my entire life. I probably should have asked to move, but the flight was packed and I never saw empty seats anywhere.

So next time some stranger starts to question your food choices, thank your lucky stars you are not stuck on a 14 hour flight next to that person.

Should have told him that gluten also makes you throw up....he probably would

have left you alone.

I have a friend who was about 21 at the time, she was model-beautiful, 6' tall, long

blonde hair and men constantly bothered her for dates and it creeped her out as

she was not comfortable with her good looks. I told her to pretend she was

ah...picking her nose....and that would make them run away. She did at times and

it worked.

debmidge Rising Star

People also have selected hearing. My husband was diagnosed in 04 and for

the entire year from 04-05 I was explaining to my co workers and manager

what celiac was all about - only because they saw me reading celiac info at

lunch hour and bringing gluten-free food back from the stores at lunchhour. Many

knew that my husband was diagnosed with it. My mini-manager - I'll call her "D"

(called a Team-Leader over our 2-person unit - and that was a joke! they "gave" her

that title because she was with the company from when she was 17, but she was

a little jealous witch and make life miserable for me for the 3 years I stayed there.

I took the job not knowing that the job was open for months and no one from within

the company wanted the job because they knew they'd have to work with "D")

was annoyed that I did have to make calls during work hours to pharmaceutical companies and

food manufacturers for gluten-free Status. Many I did during lunch hour but oftentimes I

had to leave my name and number for a return call and I could not control

at what hour they'd call me back.

Anyway knowing that my husband was very ill from celiac, knowing that it was

gluten-based, knowing it because you "D" who berated me as I used the phone during work hours

(let's not go into the hundreds of hours "D" used the work phone to call places

and relatives when "D" was making her wedding plans! "D" was a little jealous hyppocrite and a phoney - a co worker - I'll call her "M" a couple of years before "D" finally found a boyfriend at the age of 37 , was making wedding plans and one time "M" had to have the organist from the church call her at work to go over the music and this "D" complained to management about "M" having too many wedding calls - which "M" didn't)

this is what "D" gave me as a Christmas present: Sugar cookie (gluten) mixes with cookie cutters and

sprinkles in a basket. This after explaining to "D" for months about gluten and how I had to

throw away my gluteny pans and bakeware. So people also don't LISTEN.

So "D" FINALLY lands a boyfriend and gets married and does not invite me to her wedding...I was so relieved!!

DarkIvy Explorer
Should have told him that gluten also makes you throw up....he probably would

have left you alone.

Hahaha, it was a 14 hour flight... you betcha I got questions about the symptoms. Typically if people pick for details, I'm not embarrassed to say what's what. Tact is not my forte, in any case. This guy was a CREEPER, though. I was actually surprised by most of his reactions to the things I said, and I didn't feel comfortable doling out more details about my disease or personal life than was absolutely necessary.

At one point, I was taking a nap (for real that time) and woke up to find that this guy had left. I was pretty relieved to see how long the lines to all the bathrooms were, if you know what I mean. He comes back and says "you were asleep when I left. I was gone a long time."

"yeah I woke up a while ago and noticed."

Then he went on for a minute about how it's not like he was in there _____ (insert seriously taboo topic that guys nearly never talk about with women they don't know). I was HORRIFIED. You know, what people do in their own is their own business, but just the fact that he would even try and talk about it with me was so inappropriate that from then on I tried very hard to avoid any kind of contact with him at all. I don't know what's worse: the fact that he told me what he "wasn't" doing in the bathroom (uh, gee, thanks?) or the fact that while he was gone, I briefly wondered if that's why he had been gone so long. I normally don't think that way about strangers, but he was so weird in all of his conversations, and it was obvious he was attracted to me, that I just kind of assumed...

The whole thing was just terrible. I remember being afraid to answer symptom questions in detail, in case I when to the loo only to be grilled about whether some gluten slipped into my food and if I was airplane sick, or simply... doing something else. :/ Enlightening him seemed kind of moot anyway, since he really only seemed to care about proving his own theories about me correct.

I was so relieved to get off that plane and board a new one, where I sat next to two Japanese ladies my age who were super nice the whole way to Hong Kong.

Some people just aren't worth educating, he was definitely one of them. After that one conversation, I think I just said "um... okay, well I'm going back to sleep now." I promptly plugged my earbuds back in my ears, blasted some obnoxious rap music out of them, and waited for him to fall asleep so I could watch Harry Potter on the big screen.

JNBunnie1 Community Regular
Hahaha, it was a 14 hour flight... you betcha I got questions about the symptoms. Typically if people pick for details, I'm not embarrassed to say what's what. Tact is not my forte, in any case. This guy was a CREEPER, though. I was actually surprised by most of his reactions to the things I said, and I didn't feel comfortable doling out more details about my disease or personal life than was absolutely necessary.

At one point, I was taking a nap (for real that time) and woke up to find that this guy had left. I was pretty relieved to see how long the lines to all the bathrooms were, if you know what I mean. He comes back and says "you were asleep when I left. I was gone a long time."

"yeah I woke up a while ago and noticed."

Then he went on for a minute about how it's not like he was in there _____ (insert seriously taboo topic that guys nearly never talk about with women they don't know). I was HORRIFIED. You know, what people do in their own is their own business, but just the fact that he would even try and talk about it with me was so inappropriate that from then on I tried very hard to avoid any kind of contact with him at all. I don't know what's worse: the fact that he told me what he "wasn't" doing in the bathroom (uh, gee, thanks?) or the fact that while he was gone, I briefly wondered if that's why he had been gone so long. I normally don't think that way about strangers, but he was so weird in all of his conversations, and it was obvious he was attracted to me, that I just kind of assumed...

The whole thing was just terrible. I remember being afraid to answer symptom questions in detail, in case I when to the loo only to be grilled about whether some gluten slipped into my food and if I was airplane sick, or simply... doing something else. :/ Enlightening him seemed kind of moot anyway, since he really only seemed to care about proving his own theories about me correct.

I was so relieved to get off that plane and board a new one, where I sat next to two Japanese ladies my age who were super nice the whole way to Hong Kong.

Some people just aren't worth educating, he was definitely one of them. After that one conversation, I think I just said "um... okay, well I'm going back to sleep now." I promptly plugged my earbuds back in my ears, blasted some obnoxious rap music out of them, and waited for him to fall asleep so I could watch Harry Potter on the big screen.

Can't the airline attendants do something about that?

Jenny (AZ via TX) Enthusiast

I think some people try, but they don't get all the little things. I understand that, because I was totally ignorant of the little things until it mattered to me. I recently went home to visit family. I stayed with my dad who is now living by himself (mom has advanced Alzheimers and now lives in a private home). We were doing birthdays and everyone was bringing something. One of my sisters was making potato salad, which I love, over at my dad's house. She asked about all of the ingredients and I was thrilled thinking, OMG, she gets it. I even told her to use the stainless steel pots instead on the nonstick. She did. Everything is great, right?

Well, I tasted the potato salad and it was yummy. I told her I would help clean up and I looked at the bottom of the pot she used for the potatoes. There was stuff (don't know what) stuck on the bottom, like it had been burned. I was horrified! My dad, bless his heart, is not the best housekeeper since mom is not there. My sister did absolutely everything right except make sure the pot was really clean. I thanked her for making the potato salad, but told her I wasn't willing to risk it. It did not go to waste as we had a huge family gathering and everyone loves it. I'm so happy that she tried so hard.

Another sister got it all right. She made baked beans and asked about every ingredient. She got brisket and smoked turkey and talked to the guy at the meat market to find out all ingredients. I also had gluten-free cupcakes make from a gluten-free bakery.

I think it is really hard because there are so many hidden sources of gluen which many people would not think of. I had to do a lot of reading to find out the little things. I wish my family would read "Living Gluten Free for Dummies". So much info and not so overwhelming.

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    • trents
      Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain. Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.
    • Nathan.
      Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose.  Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.   After two weeks, they discharged him. Said it was not  benefitting him.  Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything.  Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th. In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases. If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying? I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger.  He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts.  If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.   Take care, Karen  
    • Scott Adams
      Most likely cross-contamination I believe.
    • cristiana
      I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well. From Coeliac UK "The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary." So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it. As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.
    • knitty kitty
      Hello,   The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine.  We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease.  Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals.  There are eight B vitamins that all work together.  Thiamine deficiency often shows up first because our bodies use so much of it and it can't be stored very long. Thiamine deficiency symptoms can appear in as little as three days.  Without thiamine, the other B vitamins may not be able to function properly.   Thiamine is needed to clear lactic acid accumulation caused by the inhalers: Shoshin beriberi provoked by the inhalation of salbutamol https://pubmed.ncbi.nlm.nih.gov/12951730/    Significant Lactic Acidosis from Albuterol https://pmc.ncbi.nlm.nih.gov/articles/PMC5965110/ Albuterol-Induced Type B Lactic Acidosis: Not an Uncommon Finding https://pmc.ncbi.nlm.nih.gov/articles/PMC7263006/ Lessons of the month 1: Salbutamol induced lactic acidosis: clinically recognised but often forgotten https://pmc.ncbi.nlm.nih.gov/articles/PMC6964186/ An Overview of Type B Lactic Acidosis Due to Thiamine (B1) Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC10731935/   Thiamine has antifungal and antibacterial properties.  Thiamine helps keep Candida in check.  Thiamine helps keep SIBO in check.  Thiamine helps with black mold, Aspergillis infection.  Riboflavin helps fight Candida infection in the mouth. Riboflavin Targets the Cellular Metabolic and Ribosomal Pathways of Candida albicans In Vitro and Exhibits Efficacy against Oropharyngeal Candidiasis https://pubmed.ncbi.nlm.nih.gov/36625571/   Thiamine deficiency can make ones voice hoarse and can cause localized edema.  Niacin deficiency can make ones voice hoarse.  (Niacin deficiency and Thiamine deficiency can each cause irritability, agitation, and lability.) Hoarseness in pellagra https://pubmed.ncbi.nlm.nih.gov/21507655/ Hidden Hunger: A Pellagra Case Report https://pmc.ncbi.nlm.nih.gov/articles/PMC8152714/   Anesthesia can cause B12 deficiency.  B12 deficiency can show up as mouth sores and geographic tongue, diarrhea, and dementia. Vitamin deficiency, a neglected risk factor for post-anesthesia complications: a systematic review https://pmc.ncbi.nlm.nih.gov/articles/PMC11823251/ Neurologic degeneration associated with nitrous oxide anesthesia in patients with vitamin B12 deficiency https://pubmed.ncbi.nlm.nih.gov/8250714/ Subacute combined degeneration of the spinal cord following nitrous oxide anesthesia: A systematic review of cases https://pubmed.ncbi.nlm.nih.gov/30144777/ The Effect of Vitamin B12 Infusion on Prevention of Nitrous Oxide-induced Homocysteine Increase: A Double-blind Randomized Controlled Trial https://pmc.ncbi.nlm.nih.gov/articles/PMC4052402/     Eating a diet that is heavy in carbohydrates can precipitate a thiamine deficiency.  As the amount of carbohydrates consumed increases, additional thiamine is needed, otherwise the carbs will be stored as fat.   Thiamine deficiency disorders: a clinical perspective https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/   The deficiency symptoms of some of the B vitamins cause gastrointestinal symptoms that resemble the same symptoms as when being glutened.   Thiamine deficiency can present as vomiting, diarrhea and abdominal pain (Gastrointestinal Beriberi).  Niacin deficiency can present as diarrhea (Pellagra = diarrhea, dermatitis, dementia, then death ).  B12 deficiency can present as diarrhea or dementia.  Not everything is caused by hidden gluten.  Gluten free processed foods are not required to be enriched with vitamins lost in processing like gluten containing foods are. Blood tests are not accurate measurements of vitamin levels, but do talk to your doctor and nutritionist about supplementing with the eight B vitamins, Vitamin C, the four fat soluble vitamins and minerals like magnesium.  Your physician can give you a shot of B12 before anesthesia administration.   By the way, Celiac Disease genes have been traced back to having originated in Neanderthals.  I'm not a singing teacher on the net.  I earned a degree in Microbiology after studying nutrition because I wanted to know what vitamins are doing inside the body.  I've experienced nutritional deficiencies myself. Hope this helps!  Keep us posted on your progress!
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