Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

Annual List Of Crazy Things People Have Said To Me Along The Way


Finally-45

Recommended Posts

Finally-45 Contributor

It's my anniversary of being diagnosed with Celiac and now that I have a 2nd diagnoses for Mastocytosis--meaning I'm also on a low-histamine diet, boy am I having fun!  That's putting it lightly so I can keep my sanity.    I had to go grain free during this last year, finally found out why I don't tolerate corn. 

 

Top 10 crazy things people have said to me last year:

1. Me: I know you're saying this product is safe, but the ingredients lead me to believe I better check the manufacturer myself.

Clerk: But there is nothing here that says wheat or anything, just malto....

2. How can you possibly eat that without a bun?

3. Were you the last to use the toaster?

4. Me: Do you happen to know what's put on your rotisserie chicken?  Is it gluten free by chance?

Waiter: ...just seasoning and soy sauce...I don't think you can have that.

Me: Wow, you know soy sauce isn't gluten free.  Thanks!

Waiter: Oh I wasn't talking about the soy sauce.

5.  If you can't eat grains, how will you get your carbs? 

6.  If you can't eat grains, how will you get your fat?

7.  Me to a family member:  Well things have changed and it can be pretty hard to feed me, I don't want to make anyone to feel uncomfortable.  Why don't you let me make a couple of dishes to share?

Family: Everyone else wants REAL food.

8. Me:  Is _____ grain free?

Customer service: Yes, it's gluten free.

Me: No, I need grain free...

Customer service: Gluten free is grain free.

Me: No, gluten free is just wheat, barley, rye, and sometimes oats.  Does it have corn or a corn derivative?

Customer service: Corn isn't a grain.

9.  Family: The grandbaby is on a gluten free diet.

Me: What formula are they using?

Family:  The ______.  (A soy and dairy free line.)

10. Someone who's known me for at least 2 years: You want a doughnut?

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Waitingindreams Enthusiast

Oh wow, haha. Those were amusing. I think a lot of people think corn is a vegetable...probably because it's included in a lot of 'mixed veggies' packages?

 

Oh, and how's this...about two months after I was diagnosed, my friend gave me a Panera Bread gift card, LOL! 

Link to comment
Share on other sites
SMRI Collaborator

Oh wow, haha. Those were amusing. I think a lot of people think corn is a vegetable...probably because it's included in a lot of 'mixed veggies' packages?

 

Oh, and how's this...about two months after I was diagnosed, my friend gave me a Panera Bread gift card, LOL! 

 Technically corn is a vegetable, at least the ears are, but since it is harvested, it's in the grain class....but it's really actually a grass when you get down to it :D.

Link to comment
Share on other sites
Finally-45 Contributor

Correct, I'm pseudo-allergic to the entire grass family, including cane sugar.  If the mastocytosis diagnosis had come before the Celiac diagnosis, it would have been easier.  Instead it's been a gradual drama of one elimination after another.  Many people with mastocytosis are fine with just removing wheat, barley, and rye from their diet.  I'm in the category of people who don't tolerate any grains/grasses, most seeds, legumes, nightshades, citrus, most dairy, red meat, eggs, and most nuts.  This is common for people with a combination of gastrointestinal disease and mastocytosis.   (Though mastocytosis itself is even more rare than Celiac.)

 

In my world, corn is definitely not a vegetable.

Link to comment
Share on other sites
SMRI Collaborator

Correct, I'm pseudo-allergic to the entire grass family, including cane sugar.  If the mastocytosis diagnosis had come before the Celiac diagnosis, it would have been easier.  Instead it's been a gradual drama of one elimination after another.  Many people with mastocytosis are fine with just removing wheat, barley, and rye from their diet.  I'm in the category of people who don't tolerate any grains/grasses, most seeds, legumes, nightshades, citrus, most dairy, red meat, eggs, and most nuts.  This is common for people with a combination of gastrointestinal disease and mastocytosis.   (Though mastocytosis itself is even more rare than Celiac.)

 

In my world, corn is definitely not a vegetable.

So what CAN you eat?? Yikes!!

Link to comment
Share on other sites
Finally-45 Contributor

The low histamine diet is tough, but again remember, people with histamine intolerance disorders or mast cell disorders usually have custom diets.  The typical low-histamine diet is high in FRESH poultry, melon, squash, green leafy vegetables (except spinach), sea salt, flower herbal teas (no black or green tea, no caffeine, most teas are not allowed), cacti, okra, blueberries (but not other berries), fatty fish, agave, maple syrup, and more.  No leftovers unless they were immediately frozen.  The meat/fish needs to be free range/wild, no antibiotics, etc. 

 

Quite a few fruits are off for most people including bananas/plantains and mangoes. Some foods are just naturally high in histamine like avocados and pork, so those are just out no matter what. 

 

Some people can tolerate egg yolks...I tried it, didn't work.  However, I think I can tolerate kefir, and most others do not.  Some people can tolerate oatmeal, I'm nauseated with oatmeal. 

 

There was a survey on mastocytosis dietary needs and though some foods have a higher percentage of reactions/triggers, it's not as if there's one single diet that works for everyone.  Nevertheless, you can understand why I say the gluten free diet looks like a buffet compared to the low-histamine diet.

 

There is a lot of similarity with the low-lectin diet, Paleo, Yeast Connection diet, and others.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,459
    • Most Online (within 30 mins)
      7,748

    linda Jed
    Newest Member
    linda Jed
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
×
×
  • Create New...