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Explaining Gluten Intolerance/celiac

LuvMoosic4life

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LuvMoosic4life Collaborator
LuvMoosic4life
Posted

It's very frustrating when people are constantly asking me "can you it this? can you eat that?" But it is more frustrating when they are asking it while I am eating. I understand it is the time when these questions would pop up, obviously, but I just feel like I need to end my explaining this to people while I am trying to eat and say "I would be happy to explain this after I am done eating" - would this be rude or wrong?? Its such a complex topic to explain to people who dont know anything about it....and the last thing I need is a nervous stomach while eating.

When I went home for thanksgiving, I pretty much made the entire meal. Just when I finally got to sit down and eat... and put one bite of food in my mouth.... my brother asks about my gluten intolerance and what happens when I eat gluten. This completely made me not want to eat anymore. I've been wanting to explain to him what I've been going through so he understands it, but the dinner table was NOT the place I wanted to exaplain it....especially symptoms. Basically i just said "it makes me sick and run to the bathroom, even from a little bit" but I was upset b/c this isnt completely true, there are SOOOO many other symptoms I go through, they just arent a very nice thing to talk about while eating....I was kinda on the spot when he asked this and it made me nervous...now i just wish I would have thought about asking to explain it to him after eating..... He went into question like "is it heredity" and questons that require quite a bit of explaining....which I would be happy to do WHILE NOT EATING. Especially since I looked so forward to eating an actual meal for the first time in FOREVER. It just ruined the whole thing.......

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converge Apprentice
converge
Posted

I understand what you mean. I end up feeling like a broken record when I spend time with new people in social situations where food is involved. I think its fair to say "it makes me really sick" and leave it at that. Your family and friends will get used to it and it wont be brought up anymore. Think of it like a new tattoo. At first, it will get lots of attention... after a while, it will just be part of you.

Good luck.

ang1e0251 Contributor
ang1e0251
Posted

It sounds like you feel you missed an oppurtunity with your brother. Could you write him a thoughtful letter or email to explain the topics he was asking about? Start off by saying you weren't trying to brush him off but discussing symptoms that are like the stomach flu were taking away your appetite. He didn't know better. Get the info to him now so maybe he won't spoil your meal again.

lizard00 Enthusiast
lizard00
Posted

It happens a lot! And logically, when we're eating. I don't see anything wrong in you wanting to hold off until after you eat, especially when you start to explain symptoms and all the gross stuff that goes with celiac.

You could just make a joke out of it and say "Look... do you really want me to tell all the gross stuff while we're eating. Let's talk about it after dinner." If he really wants to know, bring it up again after dinner or whenever you feel relaxed. He won't mind, since he asked the question in the first place. It just probably popped into his mind while you were eating, and I have two older brothers, I know how they can be. B)

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    • knitty kitty
      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      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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      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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