• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Ignorant Grocery Cashier
0

24 posts in this topic

Will try to make this short. It still amazes me how ignorant some people are about Celiac. I was buying groceries yesterday and had some Amy's frozen dinners for work, which were gluten free of course. The cashier said "oh, those are expensive. Is it because they are gluten-free?" "yes, I have to eat gluten-free" I told her. She then went on to tell me that her daughter has Celiac. I told her I did too and we ended up having a long conversation about it. She told me how her daughter was so sick a few years ago, had to go be in the hospital for IV fluids and she was "pre-cancerous" and had a lot of diarrhea. They diagnosed her with Celiac. She asked me what caused Celiac. I explained the heredity aspect, it's an auto-immune disease...and I explained what autoimmune meant. She then said "Oh, I thought it was caused from eating too much processed food." (ummm...no)

She said she thought maybe she should get tesetd for it...I told her yes it would be a good idea since she told me she was having some IBS symptoms. She asked me what Celiacs have to stay away from..I told her wheat, oats, rye and barley. She then asked me "Does white bread have wheat in it?" OMG, I couldn't believe it. Her daughter has Celiac and she doesn't have a clue! You would think people would educate themsleves just a little bit! I can't believe how people think white bread isn't made from wheat.

So, I finished my conversation and proceeded to go outside and buy Girl Scout cookies from a friend, and let my family eat them. Good thing I bought myself some chocolate I could eat before I bought the cookies.

Ugh...I wish people would educate themsleves especially when a family member is diagnosed!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Unless this womans daughter was grown when she was diagnosed and they never talk or visit I would wonder how she could be so unknowing about even the basics of the diet.

0

Share this post


Link to post
Share on other sites

That seems incredible, but some people are not educated by their family members with celiac or screened themselves by their doctors or are too dazed on gluten themselves to think straight. It may not be her fault that she seems that "dense" to you. Fortunately, we have internet access and the intelligence to read and figure things out. (And I was pretty messed up on gluten and had comprehension problems because of celiac myself for a while, so I always give folks the benefit of the doubt.) Maybe she is incapable of thinking clearly for some reason? We never know how some folks live or how "smart" they are.

Maybe her daughter never explained it to her. Did she say how old she was when she was DXed? (I mean, she is not still a child and the mother is just ignoring the DX right?) Maybe she and her daughter do not speak anymore for some reason.

Maybe you could print out some info and bring it to her?

This woman may not be able to afford health insurance or a doctor, for all we know. There may be any number of reasons why she is so ill-informed--and not just intentionally "ignorant". Years ago, I did not know what gluten was either. I learned a lot the past few years.

0

Share this post


Link to post
Share on other sites

ok, I guess I shouldn't be so judgemental about what people are thinking when they have no clue about Celiac. The statement that surprises me the most is when people ask if white bread has wheat in it. I guess that isn't common sense regardless if people understand Celiac or not? She told me her daughter is 30 years old. that's all I know.

0

Share this post


Link to post
Share on other sites

I was DXed with Celiac at the end of June, and told my family. Just about a month ago I was talking to my older sister and she asked, "so you can only eat white bread"? I was shocked! :o I had to explain to her what gluten was and that it's in most flour, bread, pasta, and baked goods. She had no idea.

I hope she never gets Celiac.

0

Share this post


Link to post
Share on other sites
Ads by Google:


ok, I guess I shouldn't be so judgemental about what people are thinking when they have no clue about Celiac. The statement that surprises me the most is when people ask if white bread has wheat in it. I guess that isn't common sense regardless if people understand Celiac or not? She told me her daughter is 30 years old. that's all I know.

Actually, I have heard the "So, white bread is okay because it is not WHOLE WHEAT, right?"----from some very "intelligent", well-educated people--so I am never surprised by that one. :lol:

Her daughter might have told her she has celiac, but perhaps she did not inform her about gluten and what foods include it---the way many of us have informed our families.

IMHO

0

Share this post


Link to post
Share on other sites

I was DXed with Celiac at the end of June, and told my family. Just about a month ago I was talking to my older sister and she asked, "so you can only eat white bread"? I was shocked! :o I had to explain to her what gluten was and that it's in most flour, bread, pasta, and baked goods. She had no idea.

I hope she never gets Celiac.

If she does, she has YOU to help her. :)

We all had to learn this information from the ground up.

I had no clue how many foods contained gluten and learning was often riddled with mistakes.

0

Share this post


Link to post
Share on other sites




She told me her daughter is 30 years old. that's all I know.

Okay now it makes more sense. I couldn't understand how someone who was feeding a celiac child could have so little knowledge about the disease. As Irish suggested maybe you could print out some info to give her next time you see her. Make sure you let her know not to go gluten free till after she gets tested.

0

Share this post


Link to post
Share on other sites

Apparently there are people who have no clue what flour is actually made from. I can understand maybe not knowing what gluten is, but not knowing that regular flour is made from wheat just amazes me. :blink:

1

Share this post


Link to post
Share on other sites

Apparently there are people who have no clue what flour is actually made from. I can understand maybe not knowing what gluten is, but not knowing that regular flour is made from wheat just amazes me. :blink:

I too have noticed that people are extremely ignorant or just plain don't think things through. I wonder where they think flour comes from.... maybe it grows on trees... or it is mined from the ground....

The next person I meet who does not know that flour is made from wheat --I am going to ask where they think flour comes from.

1

Share this post


Link to post
Share on other sites




A co-worker and I were talking about Celiac, and an older woman approached my desk. She asked what we were talking about then said, "Oh, my son had Celiac when he was a baby, but he grew out of it." It just made me kinda sad.

0

Share this post


Link to post
Share on other sites

I too have noticed that people are extremely ignorant or just plain don't think things through. I wonder where they think flour comes from.... maybe it grows on trees... or it is mined from the ground....

The next person I meet who does not know that flour is made from wheat --I am going to ask where they think flour comes from.

But, that's a tricky question, since "flour" comes from many places--rice, soy, beans, corn, tapioca, coconut, almonds, amaranth--to name a few. We all use them in our baking, right?

Make sure you ask "Where do you think wheat flour comes from?"

People do not associate WHITE flour used in baking as WHEAT.

They just don't.

It does not mean they are "stupid" --they just have never thought about it before.

You will be telling them something NEW! :) It's your chance to educate someone.

0

Share this post


Link to post
Share on other sites

A co-worker and I were talking about Celiac, and an older woman approached my desk. She asked what we were talking about then said, "Oh, my son had Celiac when he was a baby, but he grew out of it." It just made me kinda sad.

I hope you told her that people do not "outgrow celiac"?

0

Share this post


Link to post
Share on other sites

I hope you told her that people do not "outgrow celiac"?

Yeah, but the really sad thing was that she just kinda waved it off and didn't listen.

0

Share this post


Link to post
Share on other sites

Yeah, but the really sad thing was that she just kinda waved it off and didn't listen.

I don't know how long ago this person was a kid. I know people that were "diagnosed" with Celiac 50 years ago that "out grew" it. They have current bloods & endos. It appears they really had a wheat allergy that they out grew. I believe its commonly accepted that you can outgrow an allergy.

0

Share this post


Link to post
Share on other sites

I hope it was a wheat allergy. I met her son once, and he was probably around 60.

0

Share this post


Link to post
Share on other sites

I get the whole white bread is ok thing a lot. Also people tell me how good potato bread is and suggest I try it when all the varieties I see are a mix of wheat and potato. Some people just don't read ingredient labels. A lot of people just don't have an interest in learning about foods and make assumptions. I know for instance my brother-in-law avoided hummus for years because he had it mixed up with haggis. We had a good laugh explaining the difference to him. The other day at a cafe the "barista" tried to argue with me that cappuccinos and lattes were the same thing.

0

Share this post


Link to post
Share on other sites

Also people tell me how good potato bread is and suggest I try it when all the varieties I see are a mix of wheat and potato. Some people just don't read ingredient labels.

The man who runs a local gluten-free cafe/bakery told me an incredible story of an elderly man who was so happy to see they had opened and he could buy a loaf of gluten-free bread.

He reported he was "tired of eating the potato bread off the shelves for 20 YEARS because it was the only thing that was not made from whole wheat and he needed a taste change." :blink:

Apparently, he thought it was made entirely of potatoes. :blink:

So, you see...even a "veteran celiac" can be "ignorant" of the facts. :rolleyes:

0

Share this post


Link to post
Share on other sites

I get the whole white bread is ok thing a lot. Also people tell me how good potato bread is and suggest I try it when all the varieties I see are a mix of wheat and potato. Some people just don't read ingredient labels. A lot of people just don't have an interest in learning about foods and make assumptions. I know for instance my brother-in-law avoided hummus for years because he had it mixed up with haggis. We had a good laugh explaining the difference to him. The other day at a cafe the "barista" tried to argue with me that cappuccinos and lattes were the same thing.

I bet! Poor guy! Thank goodness he found a source for real gluten-free!

I know a lady who has an autistic grandson on the gluten-free/CF diet and they give him potato bread exclusively. She was pretty alarmed when I suggested that it most likely wasn't gluten-free!

0

Share this post


Link to post
Share on other sites

What is it with the potato bread? I also knew someone who had a diagnosed celiac daughter and she fed her potato bread and pizza with the crust made with semolina. She also thought that she herself might have a problem with gluten while every day I saw her eating cron dogs, pizza and grilled cheese sandwiches from the school cafeteria. And she was a teacher, for goodness sake!

0

Share this post


Link to post
Share on other sites

What is it with the potato bread? I also knew someone who had a diagnosed celiac daughter and she fed her potato bread and pizza with the crust made with semolina. She also thought that she herself might have a problem with gluten while every day I saw her eating cron dogs, pizza and grilled cheese sandwiches from the school cafeteria. And she was a teacher, for goodness sake!

Someone I know suspected her diabetic kids had Celiac. She was going to " cut down on gluten" so they got potato bread!

0

Share this post


Link to post
Share on other sites

I don't know how long ago this person was a kid. I know people that were "diagnosed" with Celiac 50 years ago that "out grew" it. They have current bloods & endos. It appears they really had a wheat allergy that they out grew. ...

Another possibility is they have untriggered celiac - which admittedly sounds strange in a "diagnosed as a child" scenario, but I'm a living example. Dx'd in mid-60s, Dr gave Mom the go-ahead for gluten when I turned 5 & there weren't any troubling health issues for decades, until a mid-90s trigger, the death of my little brother. I'd been told I "outgrew" a bunch of allergies, from some types of grass to olive trees to wheat. To be fair, the Dr did say that i'd have to watch for when celiac might return "when I got old".

There's no way she (Dr) could've known about triggers then. I'm not sure they knew about barley & rye in '64.

What I *don't* know, relative to Karen's comment, is what a celiac blood test might have shown pre-trigger.

0

Share this post


Link to post
Share on other sites

Another possibility is they have untriggered celiac - which admittedly sounds strange in a "diagnosed as a child" scenario, but I'm a living example. Dx'd in mid-60s, Dr gave Mom the go-ahead for gluten when I turned 5 & there weren't any troubling health issues for decades, until a mid-90s trigger, the death of my little brother.

My sympathies on your loss. I had a similar triggering event, although I had symptoms most of my life, in retrospect. My Dad's death 4 few years ago just put me over the edge.

I met a man in his 50's at the local gluten-free cafe who told me he had failure to thrive as a child. They had his parents do a gluten-free diet (not easy in the 60's and his Mom struggled to find him safe foods) and when he went to college, he slacked off, but felt fine. Until he didn't--and became very ill.He went gluten-free for life.

They did "think" you could "outgrow" it back then. But they were wrong. And that is why there is a whole group of people in their 50's and 60's (like my cousin's wife who was one of those babies) who have multiple health problems and AI diseases.

0

Share this post


Link to post
Share on other sites

I don't know how long ago this person was a kid. I know people that were "diagnosed" with Celiac 50 years ago that "out grew" it. They have current bloods & endos. It appears they really had a wheat allergy that they out grew. I believe its commonly accepted that you can outgrow an allergy.

Or GROW INTO an allergy...LOL...I used to eat blueberries as a kid all the time! Now as an adult I get stomache Hives,(its like quarter sized bee stings in my stomache that hurt very much...Gluten does the same thing to me ,only it affects the entire intestinal tract and the sores are smaller!)Where as my twelve yr. old USED to have trouble with milk ,but now has no problem with it! He still can't have shrimp or peanuts though...I've heard of some people out growing a peanut allergy...but his reaction is so severe I don't think we are going to test that out any time soon!!! :blink::ph34r: My 21 yr. old USED to have ceriel and milk ALL the time...NOW the milk upsets his stomace and gives him extreame acne and D! But he can eat cerial with ALMOND milk! Only now that he's found out this secret...he drinks up all my almond milk...I guess he REALLY missed ceriel!!! LOL :rolleyes::D

As a child I couldn't come within a 100 ft. (or so) of a eucaliptice tree....now, I don't even notice them...and we have a lot of them around here because of the LA zoo (they keep them around for the Koalas (or so I've read / they were planted around town in the 50's!)

Everyones different and allergys are just another bodily reaction!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,378
    • Total Posts
      935,770
  • Member Statistics

    • Total Members
      65,070
    • Most Online
      3,093

    Newest Member
    Catseyez
    Joined
  • Popular Now

  • Topics

  • Posts

    • The full celiac panel includes: TTG IGA TTG IGG DGP IGA DGP IGG EMA IGA   You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works. Good luck in your search.
    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
    • Reviving this thread as I am in search of better care for my child, diagnosed this spring with off the charts antibodies. She experiences significant mood effects from gluten and all I get from her GI and ped are blank looks - they aren't familiar with the idea that it can affect one's mental or emotional equilibrium or brain. (I would bet that if we scanned her brain, there would definitely be some evidence of damage.)  Obvs we have her 100% gluten-free and are very cautious, but given that even the slightest glutening sends her into despair and suicidal ideation, I am looking for a doctor that *does* understand the connection and can give us better guidance so I can feel more confident that she'll stay safe until her gut heals. Any recommendations (in SF bay area, or anywhere really) would be welcomed! 
  • Upcoming Events