Jump to content
  • 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:
    Support Our Content
    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?


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! 

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.

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.

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!!

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.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    2. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    4. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    5. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,324
    • Most Online (within 30 mins)
      7,748

    mao5617
    Newest Member
    mao5617
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.