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fisharefriendsnotfood

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fisharefriendsnotfood Apprentice

I've been thinking, and I realize that being Celiac means we are very aware about what we eat. Like, we know every ingredient of every food item that enters our mouths. Here's a short story:

Me and two of my really, really good friends were at Baskin Robbins for ice cream. I got mint chocolate chip in a cup, obviously (mmmm...), my other friend got the same in a cone, and the other friend got chocolate chip cookie dough in a cone. We get out ice cream, and my friend who I'll call J for the purpose of this story, offers me a lick of her chocolate chip cookie dough ice cream. (By the way, she knows very well that I'm Celiac.)

J: Want some?

Me: Um, no thanks.

Other friend: She can't eat that!

J: Uh, why not?

Other friend: She's allergic to wheat! (lol that's what they think Celiac is... my oh my)

J: So?

Other friend: So, she can't eat chocolate chip COOKIE DOUGH ice cream, you idiot!

J: Why not?

Me: What do you think cookie dough is made of???

J: Cookie dough has wheat in it?

Me & Other friend: Yes!!!

J: Oh. Who knew? Sorry.

Yes, my friend isn't too bright about things like that.

So I was thinking, I was the only ten year old kid who knew what maltodextrin and wheat protein is. No one else knows what they're putting into their bodies. They don't even care or have a clue! I think I'm very lucky to have all this knowledge. Plus, I find food and how the body, especially the digestive system, works now.

Thanks for reading this long story!

Jackie


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mommida Enthusiast

Jackie,

I read your story and have to tell you until the end, I thought the friends were my age. (30 something) I have conversations like that all the time. You are right when you say you are better educated because of your Celiac diagnoses.

Laura

fisharefriendsnotfood Apprentice
Jackie,

I read your story and have to tell you until the end, I thought the friends were my age. (30 something)  I have conversations like that all the time.  You are right when you say you are better educated because of your Celiac diagnoses.

Laura

<{POST_SNAPBACK}>

Oh, I'm not ten years old! I'm fourteen! Sorry about the confusion.

  • 2 weeks later...
Guest BellyTimber

I agree absolutely about this blessing

skoki-mom Explorer

I actually had a very well educated person say to me "pasta's got wheat in it?? :blink:

frenchiemama Collaborator

It's amazing how clueless some people are. I mean, even before I was diagnosed, I certainly knew that things like bread, pasta and cookie dough had wheat in them. But I'm constantly astounded by the number of people who don't seem to know anything about their food at all. What exactly do they think the stuff is made of??

PreOptMegs Explorer

If I had a dollar from every person who didn't know that "white flour" had wheat in it..............


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nettiebeads Apprentice
If I had a dollar from every person who didn't know that "white flour" had wheat in it..............

<{POST_SNAPBACK}>

This thread makes me laugh at all the times I've had to educate people about what has flour/gluten in it. My office is right off of the kitchen. Several ladies will go next door to the grocery store (we're in a strip mall) and come back with lots of goodies (?) Like cookie dough ice cream AND cookies! They'll offer me one, and I'll say no I can't have that, then they'll offer me the other! Hello!! cookie dough and cookies have exactly the same ingredients! or offer crackers or something else and always surprised that they contain wheat. I can't get mad or anything, they are being generous, even if I can't eat what's being offered.

Rachel--24 Collaborator
  Several ladies will go next door to the grocery store (we're in a strip mall) and come back with lots of goodies (?)  Like cookie dough ice cream AND cookies!  They'll offer me one, and I'll say no I can't have that, then they'll offer me the other!  Hello!! cookie dough and cookies have exactly the same ingredients!

<{POST_SNAPBACK}>

:lol::lol: That made me laugh!!!!

Funny thing is if I never had to learn about this diet I would probably be one of those people who says "pasta has wheat?" :ph34r:

I don't think I had ever read a food ingredient label in my life.

Nicolette Rookie

I had something similar to this just yesterday. My in-laws came to visit us and we live on an island on the south coast of the UK, so its a popular holiday place and for those of you who don't know, in England, fish and chips out of paper is quite a favourite here.

Well, my mother-in-law, a very educated lady and quite a cook, said "let's all have fish and chips for lunch"

I said, I can't, because of the fish being coated with flour before it's put in batter and fried.

So she said, "oh, well just have the chips then."

HELLO?

I then had to explain that the fish was fried in the same oil as the chips and i really didn't fancy doing that at all. Next, my father-in-law, also an educated man who ran his own business for many years said to me, "so, this coeliacs thing, I guess it's okay for you to have a little bit of gluten, isn't it? You know, like diabetics can have alittle bit of sugar"

I just stared for a moment. I just didn't know what to say. Eventually, I replied about it being totally different and tried to go into detail, but i could tell they just didn't get it.

It's quite sad really. <_<

Guest GITRDONE

I totally agree, people don't think before they open there mouths.

When people tell me that a ccrumb can't hurt you. I now reply that that crumb will make me vomit like you would if you had the flu and its not a 24 hour flu its more like a 10 day flu. If they don't get that then I start in on the deterating intestinal linning caused by that crumb.

Anyway along the same note. My neighbors grand kids came over (4 & 6) to my place with their parents. And the parents told the kids "that is where you Macdonold hamburgers come from and the milk for your cereal, while pointing at my steer. :lol::lol: Then they went to pig pen and told them this where bacon comes from. These poor city kids didn't have clue and the parents weren't much better.

I think we are genius's compared to most people when it comes to food. But I also know that I'm eating much better then most.

Susan

fisharefriendsnotfood Apprentice

Today I went to a friend's birthday party and when I told them about Celiac when they saw I wasn't eating pizza, one asked if I could have whole wheat bread.

WHOLE WHEAT!!!

Oh my goodness. But this isn't very fair, since she isn't the smartest.

-Jackie

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