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What To Say?

Heater

By Heater
in Coping with Celiac Disease

Recommended Posts

Heater Rookie
Heater
Posted

What's a good way of saying what happens when you eat gluten?

I have to eat out with people quite a bit for work, and I never know what to say past 'it makes me sick' if they keep asking. Generally I just go out for one or two meals with the same people, then never see them again- they're here for business, so I don't feel the need to explain it in a lot of detail. And I don't even really like talking about it all- in detail or not.

Any ideas on what I can say? Or how to change the topic?

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chrissy Collaborator
chrissy
Posted

it damages your small intestine.

TriticusToxicum Explorer
TriticusToxicum
Posted
it damages your small intestine.

I say "intestinal distress" if I think I'll ever see them again. They usually look at me quizically for a moment and then you see the light bulb go on...

gfp Enthusiast
gfp
Posted

I just say it''s not fitting conversation for a dinner table!

If they press I just say my body tries to get rid of it any and which way it can.... now can we move on!

Corkdarrr Enthusiast
Corkdarrr
Posted

I tell them that it's similar to having the stomach flu.

I've never had to carry the conversation any further than that.

-Courtney

StrongerToday Enthusiast
StrongerToday
Posted

If we're at the table, I'll say something like "oh, you're eating... best not to talk about it right now".... that usually shuts them right up :rolleyes:

mookie03 Contributor
mookie03
Posted

I have to deal w/ that at work too, but i just say something like "it's an auto-immune reaction, so the symptoms vary and a lot of the effects are long-term so they are more difficult to pinpoint"

It is vague enough that they wont ask too many questions and u dont have to get into the details

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Mango04 Enthusiast
Mango04
Posted

If people keep asking and I really don't want to talk about it I just say, "my immune system attacks and destroys my internal organs." It's never failed to totally shut people up LOL.

Nantzie Collaborator
Nantzie
Posted

I call it "bathroom issues", but I feel like even that is saying too much. I like Courtney's description of saying it's like having the stomach flu. I think I'm going to start using that.

Nancy

tiffjake Enthusiast
tiffjake
Posted
What's a good way of saying what happens when you eat gluten?

I have to eat out with people quite a bit for work, and I never know what to say past 'it makes me sick' if they keep asking. Generally I just go out for one or two meals with the same people, then never see them again- they're here for business, so I don't feel the need to explain it in a lot of detail. And I don't even really like talking about it all- in detail or not.

Any ideas on what I can say? Or how to change the topic?

I always say "its like food poisoning" because they get the idea, and I don't have to share the details.

Green12 Enthusiast
Green12
Posted
If people keep asking and I really don't want to talk about it I just say, "my immune system attacks and destroys my internal organs." It's never failed to totally shut people up LOL.

Excellent response Mango :lol::lol:

carriecraig Enthusiast
carriecraig
Posted

Reading your post reminded me of a topic that I started in January: Open Original Shared Link

Most annoying comments/questions asked.

Some of the answers are hysterical - this is my favorite: Yea, I've gotten the "Can't you just eat a LITTLE??" Yea, I answered... if I want MOLTEN ACID shooting out my butt.

chrissy Collaborator
chrissy
Posted

one of my kids has no symptoms, and of the other two, only one gets intestinal distress----so the bathroom stories don't necessarily work for us.

eleep Enthusiast
eleep
Posted

molten acid!

hahahahahahahahahahaha! snort! hahahahahahahahahah!

eleep

happygirl Collaborator
happygirl
Posted

I tell people it causes an auto-immune reaction that in turn damages my intestines and causes numerous long-term health problems, as well as "making me sick." I quickly move on and say, if I don't eat it, then I'm fine!

And move on!

Now my poor friends know the REAL story (those poor poor people)

2Boys4Me Enthusiast
2Boys4Me
Posted

Ty doesn't get symptoms, so I tell people it's like smoking - Nothing's happening on the outside, but damage is happening inside.

Lymetoo Contributor
Lymetoo
Posted

Thanks for the good answers!!

Turtle Enthusiast
Turtle
Posted
If people keep asking and I really don't want to talk about it I just say, "my immune system attacks and destroys my internal organs." It's never failed to totally shut people up LOL.

:lol: GOOD ONE!!!

I like the molten acid coming out my butt comment too! TOO FUNNY!

teebs in WV Apprentice
teebs in WV
Posted

I don't typically have intestinal symptoms, but I do have DH. I typically show my arm and when people see the visible scars they get it. But even then, I get the feeling that they just think "big deal, she gets a rash". After a year I am still not sure of myself when asked the question........

Guest ~jules~
Guest ~jules~
Posted

I usually say imagine how you would feel if you drank drano, or if its someone I'm close to I just use the stomach flu as an example. Oh god, my husband told a waiter I may go into seizures, thats never even happened to me, I guess he felt like the guy wasn't listening :blink:

Mtndog Collaborator
Mtndog
Posted

I usually say that it's like a combination of stomach flu and a REALLY bad hangover that lasts for 3days- weeks. The look on their faces says it all. :P

taz sharratt Enthusiast
taz sharratt
Posted
I just say it''s not fitting conversation for a dinner table!

If they press I just say my body tries to get rid of it any and which way it can.... now can we move on!

very polite gfp.

luvs2eat Collaborator
luvs2eat
Posted

Ha ha... molten acid shooting out of my butt is my response... if they persist beyond my more polite answer of, "I have serious intestinal distress."

ianm Apprentice
ianm
Posted

I say "Okay I'll eat it but you're the one who's cleaning up the mess not me." Usually gets the point across.

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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