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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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    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
    • catnapt
      good luck! vital wheat gluten made me violently ill. I will touch the stuff ever again.  
    • catnapt
      I wouldn't consider this lucky. I can NOT tolerate the symptoms. And I googled it and I was not even getting 10 grams of gluten per day and I was extremely ill. They'd have to put me in the hospital. I'm not kidding.   I will have my first appt with a GI dr on March 4th   I will not eat gluten again - at least not on purpose   they are going to have to come up with a test that doesn't require it. 
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