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


Finally-45

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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?


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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.

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      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
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