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Ignorant People


clhsc

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angel42 Enthusiast

I totally understand. I used to bake constantly before I was diagnosed around 1 1/2 months ago. My MIL gave me such a hard time because I didn't bake for Thanksgiving. I told her I would be happy to make something gluten-free. She quite pointedly said "absolutely not" I'm sure I'll get the same hard time for Christmas. I'm just going to make some gluten-free cookies and bring them over and not tell her they are gluten-free. :)

My really sweet boss ordered me a salad from Fatz and went into great detail about NO CROUTONS, NO BREAD... and she requested that they mix it all in a clean bowl! My goodness, I love her!

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Rusla Enthusiast

I would be compelled to sign said person up to bring a large rat poison lasagne. Then I would tell her that gluten and her pasta salad has the same effect on you as that rat poison lasagne would have on everyone else.

tiredofdoctors Enthusiast
I would be compelled to sign said person up to bring a large rat poison lasagne. Then I would tell her that gluten and her pasta salad has the same effect on you as that rat poison lasagne would have on everyone else.

That's the best one yet!!! We had Thanksgiving at my in-laws, and my MIL -- bless her heart -- just doesn't get cross contamination. My SIL, though, does, so she called, asked me about ALL of the ingredients, and made a special dish WITHOUT the cracker crumbs first, then covered it so that I would have SOMETHING to eat. At my mother's, my cousin was getting ready to put rolls in the oven. My aunt asked what a particular dish was, and my mother said, "Oh, that's Lynne's macaroni & cheese." She was standing right by the oven, so I quickly asked, "Is it covered?" No one answered . . . I again, kind of frantically said, "Is my macaroni & cheese covered?" My aunt turned around and said, "What's the big deal . . . there's no flour around here." I said, "Well, those rolls are getting ready to go into the oven, and if even a CRUMB gets into my macaroni & cheese I can't eat it." My aunt did the eye-roll thing. It made me furious, and my mouth just took over my body. I just looked at her and said, "You know, if I was a REGULAR 'stomach' celiac, I would throw up, have diarhhea, things like that. But one crumb of bread means that I will have at least one more brain cell destroyed. If it gets to my brain stem, you guys will have a neice that's a vegetable. On life support. Who's going to decide to pull the plug?" The whole kitchen got VERY quiet (we're talking a really loud family -- my mom & her sisters are LOUD -- not to mention, cousins, etc.) My mother said, trying to smooth things over, "Well, it's covered, so we don't have to worry." THEN, my aunts began to question my mother -- they said, "So it's an allergy?" From the other room, I said, "No, it's an autoimmune disease. Just like Rheumatoid Arthritis or Lupus." Then later on, my dad was trying to tell my uncles about it. They again said, "So, she has an allergy to wheat? My dad didn't quite get it right -- he said, "Oh no -- not just wheat, barley, rye, oats -- or ANYTHING that has it IN it. That's the problem. You don't know all the time if it's in it. It's really frustrating." I just gently said, "Daddy, you forgot the part that it's not an allergy. It's an autoimmune disease." Then he said, "Oh yeah. What happens is . . . . " and went on to describe the whole process of how it destroys the brain. I was impressed -- he's done his homework!

I think it's funny that even RELATIVES would be so callous about a disease that is so devastating. Co-workers -- it's no wonder they're like that. If they only had to live with this disease for two days . . . . .

I'm sorry to hijack the thread with my rant -- just realized I did. It just infuriates me that ANYONE would disregard a disease like this. SIGNED YOU UP TO BRING PASTA SALAD? PUHLEEEEEEEEZE. It would have been fun to have a friend cook some pasta salad and make it taste TERRIBLE. Bet they wouldn't sign you up for it again!!!!!!!

2Boys4Me Enthusiast
My aunt turned around and said, "What's the big deal . . . there's no flour around here." I said, "Well, those rolls are getting ready to go into the oven, and if even a CRUMB gets into my macaroni & cheese I can't eat it." My aunt did the eye-roll thing. It made me furious, and my mouth just took over my body. I just looked at her and said, "You know, if I was a REGULAR 'stomach' celiac, I would throw up, have diarhhea, things like that. But one crumb of bread means that I will have at least one more brain cell destroyed. If it gets to my brain stem, you guys will have a neice that's a vegetable. On life support. Who's going to decide to pull the plug?" The whole kitchen got VERY quiet (we're talking a really loud family -- my mom & her sisters are LOUD -- not to mention, cousins, etc.)

Lynne - you forgot the part where you tell them it's genetic and you got it from one of THEM. Start pointing fingers. "You! Passing out after eating the turkey and stuffing. You're next! This will be you one day!"

Of course you have to do that when your Mom and Dad are not within earshot but I bet you'd feel pretty good. That'd shut them up and stop their eye-rolling. Or would it? :ph34r:

zansu Rookie

Did you ever consider that WHY family are so bad about it. The possibility that they have or will have it? and that they are still in denial?

ajay Newbie
So, we are having a party at work today. Usually we sign up for food to bring and I will bring a big salad for myself and a coworker who have celiac disease. How about this girl signed me up to bring three pounds of pasta salad?

Since when do other people sign you up for what you're going to bring? That alone sounds rude to me.

I know I'm reaching here, but a surprising number of people don't think about food ingredients. It's possible that she didn't realize that pasta is a wheat product. I know that sounds ridiculous, but trust me, I've had people offer things like "Well, obviously I can't make it wioth bread-- should I use a pita pocket?"

Or one sweet waitress who kindly checked the ingredients of a dish and sadly informed me that the dinner rolls had wheat in them. Nice of her to check, but, yeah, I knew that one...

Smooreberry Newbie
Lynne - you forgot the part where you tell them it's genetic and you got it from one of THEM. Start pointing fingers. "You! Passing out after eating the turkey and stuffing. You're next! This will be you one day!"

Of course you have to do that when your Mom and Dad are not within earshot but I bet you'd feel pretty good. That'd shut them up and stop their eye-rolling. Or would it? :ph34r:

I'm crying I am laughing sooooo hard!!! I'm seriously saving this one. I avoided Thanksgiving but this may come in handy if I go home for Christmas. You ladies rock!!


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      Are Lindt chocolate balls gluten free?

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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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