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Seriously?

celiacgirl1982

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celiacgirl1982 Newbie
celiacgirl1982
Posted

As a relatively new celiac sufferer (one year), I'm adjusting to have to explain my new set of dietary regulations over and over. This is a light-hearted review of some of my favorite commentary from others. List some of the funny ones you have heard!

Upon turning down a food item with a brief explanation of my condition, I hear

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  • Replies 70
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Skylark Collaborator
Skylark
Posted

Waiter: You can have the white bread, but not the whole wheat.

Me: Oh, really? What is the white bread made from?

Waiter: Flour.

Me: And what is the flour made from?

Waiter: Well you know it's just flour, like you get at the store. :lol:

GFreeMO Proficient
GFreeMO
Posted

My neighbor A NURSE said...Oh, I could never do that, I love bread too much. :rolleyes: :rolleyes: :rolleyes:

Skylark Collaborator
Skylark
Posted

One of these days I'm going to find one of those flour trees that people seem to think grow somewhere. I'm curious whether the brand name is already printed on the bags that hang from the branches.

rosetapper23 Explorer
rosetapper23
Posted

My favorites:

Me: No muffin for me--I can't have wheat.

Server: Oh, then you can have the blueberry muffins--they're only made of blueberries!

Me to yet another server: Do you know what kind of flour is used in your ______?

Server: It's white flour.

Yes, apparently, flour is made of only one thing: flour.

Adalaide Mentor
Adalaide
Posted

I have rolled my eyes and put my face in my hand at people who are like "there's wheat in flour?" as if they didn't know. HOW DO YOU NOT KNOW THAT?!?! Where do people think flour comes from? Bashing my head against my desk until I bleed would be less painful than some of the conversations I've had with some people.

My favorite will still always be "well isn't there a way you can knead the bread to like... beat the gluten out of it?"

I'm surprised I didn't bleed out of my ears trying not to laugh right in her face and tell her that was by far the most stupid thing I've ever heard in my life. (And I spend a LOT of time on the internet.)

srall Contributor
srall
Posted

WEll, I'm 2 plus years in and have heard all of those over and over.

We were traveling this past week (in New Orleans, 9 year old and me gluten free) and in one restaurant I asked for the gluten free menu. I knew they had one because we had eaten there the day before (server was AWESOME that day). This girl, however, was so confused. She brought the vegan menu. I said, "Well, we're sort of the opposite of vegan." It was very hard to explain to her what gluten free was. In her defense she was very young and heck...I would not have known at her age. But I seriously considered leaving.

Good news: First trip ever without getting one bit sick. New Orleans did right by us.

I also love the one when you tell people you're gluten free and they will say, "Hey, did you know Cub has a gluten free section?"

Pretty much. People want to help. Gotta' love 'em.

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bartfull Rising Star
bartfull
Posted

The ones that get to me are things like, "Oh yes, I've gone gluten-free too!", as they stuff a breaded and deep fried mushroom or something similar in their mouths.

nvsmom Community Regular
nvsmom
Posted

I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

~**caselynn**~ Enthusiast
~**caselynn**~
Posted

I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

I have just the opposite, they all are very concerned, especially when we eat out. To the point where they will badger the waiter, leaving me saying" wait! That's my job!" Lol gotta love their enthusiasm. My best friend in particular did that exact scenario one day, to the point that I didn't even need to explain how to keep my meal seperate cooking wise. She then, mid conversation, offers me a roll heehee...really? Gotta love her! She's got my best interest at heart, but still talks to me like nothing ever changed haha ?

Adalaide Mentor
Adalaide
Posted

I have a bunch of friends who are EXTREMELY food aware and really splurge with only organic foods (which is great but expensive) so I had almost no sympathies from any friends. I had quite a few "At least there's lots you can still eat" to even a "welcome to our world" from a friend who has chosen to eat this way, and can afford to without batting an eye.

I'm only one week into this so I'm dying for someone, anyone, to say "oh, that's got to be tough," when I tell them of my recent diagnosis. Anyone!

Lots you can still eat? A week in I thought I was going to starve to death. It isn't like you can go eat organic wheat bread, how insensitive of them. It's one thing to make a choice to eat a certain way, it is entirely another to have dietary needs thrust upon you. Some people just... grrrrrr, at least we understand it's tough.

Juliebove Rising Star
Juliebove
Posted

I got comments from people about how they could never stick to that diet or how they would kill themselves if they couldn't eat _____. Now I am not a celiac but I do have food intolerances. And for me all it takes is the pain and/or stomach or other symptoms those foods give me to know that I will never willingly or knowningly eat them again. I am even so cautious that if I don't know what is in something, I won't eat it.

The thing that still gets me is to go to a place with a gluten-free menu, order off of it and then still get croutons on your salad.

auzzi Newbie
auzzi
Posted

I did laugh at the woman who exclaimed that she had gone "gluten free" because it was a very healthy diet. So much so that she was trying to put her 13-year old son on it also. He was resisting ..

Was she coeliac/intoleran/allergic or even sensitive ? No, but she knew all about it due to her line-of-work .. which was ? she worked in a Health Food Store for one-day each week ..

Again, I laughed .. My boss was not happy with me laughing at her, but I was amused ..

~**caselynn**~ Enthusiast
~**caselynn**~
Posted

There's a lady like that where I work as well, lol. We have talked many times about how it's not to be a diet fad, that just because it's gluten free doesnt mean it's healthy, theres junk food gluten free too! Haha she didn't listen to me, I tried to explain that even though I'm celiac I don't even eat a lot of the processed things, I eat rather cleanly. She recently said to me, that gluten frees stuff can be just as unhealthy as the regular version...HELLOOO!?!? Haha I refrained from pointing out the obvious, but come on!! Oh common sense, where have you gone....I still chuckle about that when I see her.....

ravenwoodglass Mentor
ravenwoodglass
Posted

I volunteer at a place where we have a table full of different baked goods that people can have. Every once in a while we get potato bread or rolls in. Can't count the number of times someone has plopped down a package and said 'Look we have some bread you can eat today'. Yea right cause that potato bread is made with just mashed taters.

Also frequently hear people say they wish they had celiac so they could be as thin as I am. Oh really you want bone pain, brain fog and constant D so you can get diagnosed and have to change your whole life around, yea right.

My boss gets it though and is always finding or bringing in stuff that is actually safe for me. She keeps me well supplied in chocolate. :)

GlutenFreeAustinite Contributor
GlutenFreeAustinite
Posted

So a very dear friend of mine from boarding school (who happens to have a peanut allergy) and I were joking around one day at dinner. I had my special food and I was telling the others at my table that you can actually buy powdered gluten in the store. The kid goes, "I'm gonna buy that and put it in your food." I looked right at him and said, "The peanut butter is right over there."

Of course, we were joking, so I wasn't offended at all, and neither was he, but still.

celiacgirl1982 Newbie
celiacgirl1982
Posted
  • Author

Oh, I forgot one! How about:

"So, have you lost weight? Since you started 'doing that'?"

Like it's an arbitrary lifestyle or fitness choice, like I decided to take up roller-blading or try Atkins! No, I haven't lost weight, or maybe I have. It doesn't matter. This is about a serious health condition, not about being thin!

srall Contributor
srall
Posted

I got comments from people about how they could never stick to that diet or how they would kill themselves if they couldn't eat _____. Now I am not a celiac but I do have food intolerances. And for me all it takes is the pain and/or stomach or other symptoms those foods give me to know that I will never willingly or knowningly eat them again. I am even so cautious that if I don't know what is in something, I won't eat it.

The thing that still gets me is to go to a place with a gluten-free menu, order off of it and then still get croutons on your salad.

Now when people say something like "I would die without bread/gluten", I point out that for me I knew I'd die if I KEPT eating it...so really when faced with this dilemma it's not too hard to choose a life without bread.

Raven815 Rookie
Raven815
Posted

I am celiac (gluten-free) AND vegetarian. Imagine all of the fun stuff (not) I get to listen to. Double whammy. :blink:

Laura

SmnthMllrX Newbie
SmnthMllrX
Posted

You can have this wheat, it's organic!

And my favorite:

I cooked it...Doesn't the gluten just cook out?

Makes me want to stab myself in my ears... Over and over again.

ShannonA Contributor
ShannonA
Posted

Waiter: You can have the white bread, but not the whole wheat.

Me: Oh, really? What is the white bread made from?

Waiter: Flour.

Me: And what is the flour made from?

Waiter: Well you know it's just flour, like you get at the store. :lol:

Hahahaha
gonnabeglutenfree Rookie
gonnabeglutenfree
Posted

I volunteer at a place where we have a table full of different baked goods that people can have. Every once in a while we get potato bread or rolls in. Can't count the number of times someone has plopped down a package and said 'Look we have some bread you can eat today'. Yea right cause that potato bread is made with just mashed taters.

Also frequently hear people say they wish they had celiac so they could be as thin as I am. Oh really you want bone pain, brain fog and constant D so you can get diagnosed and have to change your whole life around, yea right.

My boss gets it though and is always finding or bringing in stuff that is actually safe for me. She keeps me well supplied in chocolate. :)

Only week one for me....with another month or so of "figuring what's really going on with me".

Have heard the most amazing diagnoses so far:

"It's just your gallbladder you know?"

"It's just your thyroid"

"It's your hormones"

"It's just stress"

"It's fatty liver disease"

"It's just because you stopped taking the pill"

"It's just your ____".

Nope. It is exactly what I have figured it out to be.

You know...because I live inside my body and feel the things I feel and the log the reactions I log. And puke and poop and have gas lots when I eat the things I eat (tis tha wheat).

The GI doctor discredited all my complaints and high levels of everything as:

"it's just IBS. Eat some yogurt. I recommend Activia"....AFTER I told him how much yogurt I eat to try and settle my stomach, along with double strength probiotics.

*forehead smack*

The only person who understands it all is my mom. My husband too.

Mom said it best "You know your body best. If you need to stop eating something. Then stop."

My husband said "Awesome. I can live semi-gluten-free with you. It will be a lot easier than when you were a vegetarian." Bless his heart....he must love me to want to join me. :)

nvsmom Community Regular
nvsmom
Posted

I did laugh at the woman who exclaimed that she had gone "gluten free" because it was a very healthy diet. So much so that she was trying to put her 13-year old son on it also. He was resisting ..

Was she coeliac/intoleran/allergic or even sensitive ? No, but she knew all about it due to her line-of-work .. which was ? she worked in a Health Food Store for one-day each week ..

This sounds a bit like one of my friends who "welcomed me to thier world". She was telling me how she had eaten something with gluten the other day, and because she has it so infrequently now, how it caused her knuckle on her little finger to get sore and swell for a day... I nodded as politely and sympathetically as I could. LOL She's a bit of a princess. :rolleyes:

I volunteer at a place where we have a table full of different baked goods that people can have.

Oh, that would be hard for me too! I'm still in the habit of grabbing what I want, or starting to nibble of my kids' mostly finished dinners... I do seem to catch myself before it gets to my mouth. LOL

Darn210 Enthusiast
Darn210
Posted

I often get some form of "Well, that's a healthy diet to follow." and the smarta$$ in me always responds . . . "yep, cheetos and skittles are gluten free."

Skylark Collaborator
Skylark
Posted

I often get some form of "Well, that's a healthy diet to follow." and the smarta$$ in me always responds . . . "yep, cheetos and skittles are gluten free."

My smarta$$ reply to "how do you have anything to eat?" is "Truffles, caviar, and champagne are gluten-free. I do just fine."

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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