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Stupid things people say about your Celiac disease!

BuddhaBar
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BuddhaBar Collaborator
BuddhaBar
Posted

I'm really curious about stupid things people have said about your Celiac disease. Funny, annoying or mean things. Make a list 😀

1. "What does lactose free milk taste like"? 
I don't know. I'm not lactose intolerant and I've never mentioned anything about lactose to anyone. 

2. "You don't have to eat the crust. Just eat the filling!"
Yeah, that's a very good idea! Just eat the cheese and the pepperoni. It hasn't touched the crust!

3. "My daughter is allergic too, but to nuts"
Poor girl. Lucky me though, I don't have any allergies.

4. "Can you eat eggs? Can you eat rice? Can you eat potatoes? Can you eat fish? Can you eat nuts? Can you eat...." etc etc
Just ask me if I can eat ANYTHING without getting sick. That would save both time, energy and oxygen.

5. "Just go vegan!"
Yup, because wheat, barley and rye are actually animals.

6. "I don't eat gluten either. Gluten is not healthy. Well, I eat some gluten sometimes, but not everyday because it's not healthy"
Oh! Can we do an immune system transplant, please? Give me yours and I'll give you mine. 

7. "I would never buy anything gluten free. It's too expensive"
Yeah, but it's a very small price to pay for health! 

That's all I can remember for now. Please, do your list!




 

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Scott Adams Grand Master
Scott Adams
Posted

We have a friend who has known me know for at least 15 years, and I've been gluten-free through the entire time. We've been over to their home over 100 times, and they have been over to ours over 100, yet, every time I eat at their home she serves things that are clearly not gluten-free, for example she'll put out wheat crackers with the cheese, and when I put out my gluten-free crackers which I always bring with me (among other gluten-free things!), she ALWAY says "really, crackers have gluten in them?"

You can pretty much substitute almost any wheat item into this exchange, it could be pizza, muffins, pancakes, you name it...it's always the big surprise to her that these things have gluten and are made with wheat. She means no harm by it, but it always amazes me that she never seems to grasp the concept of gluten-free, and what it means.

BuddhaBar Collaborator
BuddhaBar
Posted
  • Author

Ah, the people who never learn no matter how many times you tell them. Fortunately I've found a great way to deal with those people. I just tell them they don't have to bother at all and that I will deal with my disease myself. Don't bother cooking for me, I'll bring my own food. 

Dealing with some family members who feel disrespected when I don't want to eat their food, but hey post-diagnosis I had to throw away most of my own kitchen equipment because of traces of gluten. It's kinda the same thing. Has nothing to do with respect. Gluten are protein molecules. It's not like one loaf of bread is one gluten unit that's easy to avoid. 

Scott Adams Grand Master
Scott Adams
Posted

To continue your list:

8. ) Really, ___________ has gluten in it?! (add any obvious item here, a cake, pizza, crackers, bread, rolls, etc.)

9) Can’t you eat just a little bit, it’s really good? (add in any obvious gluten item).

 

PS - This thread might be article worthy!

 

Scott Adams Grand Master
Scott Adams
Posted

10) Celiac disease sounds psychosomatic to me, the gluten-free diet could be just a placebo effect. (a lawyer I worked for said this to me shortly after my diagnosis.)

Scott Adams Grand Master
Scott Adams
Posted

11) No gluten, I would kill myself! (yes, I’ve heard this one several times)

Ivana Enthusiast
Ivana
Posted

"Maybe when you heal you can eat gluten again." 

Praising the food I liked but can't eat anymore in front of me. "OMG so good!" Then asking me: "You want to kill us now, don't you?" :)

But I actually try not to mind when people say such things. I was equally ignorant about celiac before my diagnosis and would have probably been the same. And I also don't think others can really grasp what it also means mentally when you are not free to eat whatever and have to be on the lookout all the time. 

(Medical workers who are as ignorant are a problem, though.) 

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paigem Newbie
paigem
Posted

I once had someone adamantly tell me that I was just faking it to stay skinny... this person was the mother of my boyfriend at the time. 

trents Grand Master
trents
Posted

"Can you eat vanilla ice cream?"

Scott Adams Grand Master
Scott Adams
Posted

Our salads come with croutons, can't you just pull them off? (a clue you're in the wrong restaurant!)

BuddhaBar Collaborator
BuddhaBar
Posted
  • Author

Our local Dominos: "Well, we bake the gluten free pizza in the same oven as the regular pizzas so it might not be completely gluten free"

Please, remove the gluten free pizza from your menu. 

Co-worker about using the same butter: "It's only a few crumbs"

Well, the immune system reacts to one single bacteria so... 

 

LI$A Newbie
LI$A
Posted

My older sister and I both have Celiac.  She had a stroke last year and the rehab hospital had NO MENU or even a PLAN for patients with Celiac. She had to live on cottage cheese and eggs for 3 damn weeks.  Absolutely shameful.

 

trents Grand Master
trents
Posted

LI$A, where do you live?

If I were you I would take this issue up with the food services department at this hospital and push them to develop gluten-free offerings for their patients. If they are not responsive to your input, I would consider an writing an oped for the local newspaper informing the public in your community that this hospital may not be safe for people with gluten disorders. There is no excuse for any healthcare facility that offers inpatient care to not address this need when so many people need to avoid gluten. It is not unusual or rare any longer. 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted
On 1/10/2021 at 1:31 PM, Scott Adams said:

11) No gluten, I would kill myself! (yes, I’ve heard this one several times)

After sharing it with lunch mates everyone says I could never go without (gluten any food). The next day subconsciously everyone brings a gluten meal to lunch. 🤦

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

In  addition to gluten I have other intolerances.

I am often asked "What can you eat"

Whole foods.

"Oh I shop at Whole Foods all the time"

😉

RMJ Mentor
RMJ
Posted

A doctor saying “You probably don’t have that”.

My response:  The biopsy I had last week said that I do.

Scott Adams Grand Master
Scott Adams
Posted
5 hours ago, LI$A said:

My older sister and I both have Celiac.  She had a stroke last year and the rehab hospital had NO MENU or even a PLAN for patients with Celiac. She had to live on cottage cheese and eggs for 3 damn weeks.  Absolutely shameful.

 

This is literally every celiacs' worst nightmare!

Sam85 Rookie
Sam85
Posted

“Just build up your energy levels and you’ll be able to overcome this disease.” A family doctor said this to me, I’m not even sure what that meant 😳

BuddhaBar Collaborator
BuddhaBar
Posted
  • Author
7 hours ago, Sam85 said:

“Just build up your energy levels and you’ll be able to overcome this disease.” A family doctor said this to me, I’m not even sure what that meant 😳

 

Dr._Riviera.png

Kelly Kimball Newbie
Kelly Kimball
Posted

At a restaurant, I talked to the waitress re the "sauce" that would be on the main dish. I explained that I had an autoimmune disease and couldn't eat anything with gluten in it. I told her no wheat, barley or rye. She assured me that the "sauce" was OK. When she presented the dish, clearly covered in brown gravy, she explained that it "just had flour in it .......no wheat".

This was early in my days of learning to live Gluten Free.

trents Grand Master
trents
Posted
1 minute ago, Kelly Kimball said:

At a restaurant, I talked to the waitress re the "sauce" that would be on the main dish. I explained that I had an autoimmune disease and couldn't eat anything with gluten in it. I told her no wheat, barley or rye. She assured me that the "sauce" was OK. When she presented the dish, clearly covered in brown gravy, she explained that it "just had flour in it .......no wheat".

This was early in my days of learning to live Gluten Free.

Made me laugh and reminded me of a conversation I had with a big chain restaurant chef some years ago as I was preparing for a company celebration in a few days. As I discussed different non gluten menu options with him and was about to finalize a plan, I asked him about one more particular item I was interested in for the meal. "Does this have gluten in it?" I asked him. The reply, "Oh no. That's completely non dairy." 

  • 3 weeks later...
Juca Contributor
Juca
Posted

"Don't worry, I disinfected everything."  said the cook, spraying a flour filled kitchen with rubbing alcohol... yes, you can "kill" gluten like that. 

 

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      My only proof

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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 
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