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Over-Helpful Friends?
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8 posts in this topic

"I made you some gluten free cookies. Come and get some!" was the last thing I heard from a coworker before getting glutened big time on Monday. It was so sweet of her to go out of her way and make me special cookies, but to her "gluten free" and "wheat free" are the same thing, and they definitely weren't gluten free.

Then there was the Subway incident, where Subway sandwiches were served at a gathering and I was told to take the fillings out of as many sandwiches as I wanted since the bread was off limits. When I politely turned down the offer there were some very disappointed faces. In their minds they had "solved" my dilemma by offering fillings, and didn't understand why I would refuse their efforts.

What do you do/say when people go out of their way to try and be helpful, but really miss the mark? I'd much rather they didn't bother to try and accommodate me, and just let me find options on my own that I know are safe. But at the same time I don't want to offend them.

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Some times you gotta risk offending. I just make it clear that because we are extremely sensitive we had to have all new cookware or otherwise my OWN cooking was making me sick. They get the idea. Thank them profusely for their efforts, say how delicious the cookies look and that you wish you could eat them, but you just can't take the chance. You need to portray that it is deadly serious that you not be contaminated, not just that you are afraid of a "bellyache". If you show you are that serious, they will get it.

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Gluten isn't my issue but I do have food intolerances and also diabetes. So I just tell people I will take care of my own food. When my daughter was eating gluten-free I only ever once let anyone bake for her. And I didn't really want to do that. My SIL and her sister baked a pie for her. I figured that would be safe since my SIL doesn't generally do any baking or cooking of any kind although I suppose there could have been oast crumbs or something in her kitchen. The crust was really awful. Gritty. But she didn't get sick.

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I've been dealing with this too.

I'm trying to pre-empt any such efforts in advance by telling my friends please, please don't try to make me something "special," although it's very sweet of you to think of me.

I've just had to be up front and explain that I get violently ill if there's any contamination at all along the way, even pretty much microscopic amounts.

It sounds cold, but it's not as bad as saying all this AFTER they've made something.

It's hard. I'm newly diagnosed and trying to get used to this. I'm going to a wedding this weekend and the groom was going to ask his friend the baker to make me some gluten-free cupcakes. I had to say please don't do that, it's complicated but I will get sick.

Mitzi, that's a good idea about saying my own cooking can do it too...

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I've had to explain to people what I've gone through in my own kitchen to make it safe. I've explained to people that after 10 months, my husband going gluten free, and the fact that I trust him with the life and death decision about whether or not to unplug me after a horrific accident, I still read a label on any food my husband hands me. If it isn't packaged there's an inquisition. This still isn't enough sometimes to convince people that they just can't safely make me food.

I've had people try to force me to eat fruit salad. They've told me it's ridiculous that I won't eat fruit. Well it's ridiculous that I have someone telling me what is and isn't safe for someone with a disease they don't have, don't understand and know next to nothing about. It's ridiculous for someone to make what is essentially a medical decision about my health for me. It's ridiculous for someone to get offended about the fact that I don't want to spend 6 weeks in gluten hell so they aren't offended over the fact that I won't eat a bowl of fruit. And I told them all that too.

I don't do tiptoeing. I don't like the simple "no thank you" or "I'm not hungry" approach because it doesn't deter repeat offenders. I will explain simply that I'm sorry but it simply isn't safe for me to eat food prepared in other people's homes. When they get offended though, frankly that offends me. What right do they have to be offended that I don't want to be sick and miserable or that I want to protect my health? Maybe it isn't the best approach but I tell them then exactly what I think of their reaction and how absurd it is. My disease isn't about them. I didn't ask them to make me food, I never asked to be accommodated. I'm more than happy to eat the snacks I carry in my purse. After 10 months this is more or less a non-issue for me. I'll be damned if I let someone else own my illness and health problems and turn it into how I offended them by daring to be born genetically flawed.

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I just went to a wedding reception Saturday evening. The bride offered to get something gluten-free for me and I told her I'd rather bring my own food. I thanked her for thinking of me but told her how easy it is to cross contaminate, and she was fine with that.

This reception was outdoors and there was a picnic-style buffet. I brought a chicken sandwich on Udi's and no one questioned it. If they had, so what? I'd tell them I had food allergies (because that's easier for them to understand) and leave it at that.

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I always try to head people off when they tell me they'll make something gluten-free for me. I politely tell them that if I don't make it, I can't eat it. Cross contamination is hard to understand to the degree we have to.

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I agree - it's best to nip it in the bud at the risk of offending someone. I have heard "it's gluten free, I used whole wheat flour"....huh. Also, even if they use gluten-free ingredients they are no doubt baking/making it in gluteny pans or cutting boards or colanders, whatever....you are going to get zinged.

One of my kids' friends mom made gluten-free peanut butter cookies - I was in a hurry and took a bite and drove off and my stomach was already cramping...tossed it. Thank goodness I only took a bite.

Someone brought gluten-free muffins to work - I declined & had to politely tell them their muffin tin would be all gluteny, and added don't worry about me, I am very particular and look after myself (ie. please don't try to make anything else!).

My neighbor made gluten-free squares and gave me one while we were sitting together. She's quite old & I didnt' want to offend her so I took a small bite off the top and told her they were good (she then gave me the recipe). While she was distracted I, uh, got rid of it - didn't want to eat the bottom part that was touching the pans. Funny huh ???

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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