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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Would You Do?
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13 posts in this topic

Hi-

I wasn't sure to post this here or in the "Parents/Family Of" section. It's not so much about the resteraunt as it is about how to handle this. My sister knows my 8 year old son was just diagnosed with Celiac disease. She is deciding to invite everyone to TGI Friday's to celebrate her 9 year old son's birthday. They are the only children coming, the rest will be about 7 adults. None are celiac except for my son.

I tried explaining it might be awkward for him to sit there eating a sandwich while others are enjoying burgers and other ordered food. She said, "Well, even if I had it at my house, he wouldn't be able to eat anything anyway, right?"

I wasn't sure what to say. I said, "Well there are some gluten free things he can have, some chips and some stuff."

I mentioned Outback Steakhouse and she said, "I was hoping to pay $10 a meal for people, not $17 a meal."

If she insists on having it at TGI Friday's, should I take my son anyway and have him eat a sandwich from home? I personally do not want to eat in front of him something that he cannot have, too. I want to create positive experiences with celiac, and want to keep him out of situations that might bum him out, especially in the beginning when it is all so new. I am trying to keep his outlook happy and healthy. What would you do? Maybe I should pack 2 sandwiches and we will eat those. Or not go?

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The sad thing is that he will have to go through this stuff his whole life. It sucks not having whateveryone else is having but at least when he brings his own it's something. I say take him because he will be more comfortablearound others eating gluten, especially such yummie gluten things.

I am 19 (diagnosed at 17) and still getting used to not eating or bringing my own things to places. In HS I would just not go instead of watch others eat and I missed out on a lot of fun things.

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i think that's sweet of you to offer to eat gluten-free with him. i wasn't diagnosed until i was 18 so i can't say how i'd feel at that young age, but i definitely thinking eating along with him is a good idea (i'm also not a parent though so what do i know!! haha) maybe bring something fun for a treat too like surprise him with cookies or a favorite candy?

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I have 2 younger children, my youngest is Celiac. So, I am not speaking from experience of having an 8 year old, but just an idea...why not leave it up to him? Ask him if he wants to go, and prepare him for the fact that he needs to bring his own food. I am sure you have explained this whole "gluten attacking his body" type of thing to him, so why not explain that you guys can go, but he will have to take his own food. It doesn't have to be a sandwich either...you can make him spaghetti with corn noodles, or lentil bean pasta, and then have the kitchen heat it up for you, and put it on a clean plate. They can bring it out with the rest of the food. Also, don't forget to bring a candy bar, or a gluten free cupcake for him as well!

As for you eating the same as him, I have no clue. I am sure he already has dealt with this at school lunches, and if you let him pick what he wants to bring from home, that may be enough to let you order off the menu.

Good Luck!!!

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I would call the restaurant and see if their burgers are gluten-free. Then I would bring a gluten-free bun and put his burger on it. I would also bring a bag of chips so he could have a burger and chips and the others can have a burger and fries. That way he would not feel so very different. I would encourage him to go as he should not begin a life of isolation just because he has celiac disease. It is better for him to start learning now, that it's just food, no big deal, he still is himself and has a lot to offer as a friend and playmate to others.

Just my point of view as a Mom. :rolleyes:

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These are good ideas, and I agree with not isolating him. I did think about having the kitchen heat up something, but I'm so worried that workers at TGIF could care less about contamination, or remain oblivious beyond my explanation. I didn't want to make the effort to keep him gluten-free just to have someone mess it all up on me. I thought once I let the food out of my site, it's now a risk.

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I definately agree to let hhim decide. He is going to have to make his own choices the rest of his life.

I had this talk with my 5 year old. Who has no "classic symptoms". I explained that when he sees his mom sick, it is from Celiac. His choices now might make it so he will not have to go through all that pain. The good things that this disease brought us too. We bake together. We pick a day of the week to make bread and nobody can take away the wonderful times we share talking, learning, and sharing that experience. We eat healthier. We have a bond that has only gotten stronger.

Laura

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He'll have to learn to deal with not being able to eat things other people are eating around him sooner or later, but only you (and he) can decide if it's sooner, or later. Whatever you decide, be confident about it, and don't let your sister make you feel bad for making a decision you know you have to make.

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Whether or not to go to TGIF is definitely a decision only and your son can make...keep in mind their less than helpful stance in correspondence with them re: gluten-free items and therefore I wouldn't trust them to touch food.... The bigger overall issue is your sisters thoughts surrounding gluten-free food. After the birthday thing is said and done, I would have a conversation with her and say, "Remember when you said that if you had the party at your house he wouldn't be able to eat anything?" and then tell her all the things that ARE gluten-free...he could have chicken, steak, burgers, hot dogs, fish...he can have chips and french fries, he can have ice cream...most anything you serve at home that isn't processed or has a sauce dumped on it is gluten-free. So that statement was just ignorance on her part, and it IS your responsibility to help your family and friends understand that gluten-free is a special diet, but it's not an impossible diet. I hardly think that your sister WANTS to harm your son, she just doesn't understand how to accomodate it. And how truly easy it is to accomodate it. After all, if her son had a peanut allergy, would she want to spend your sons birthday at the Planters Peanut factory??

Bridget

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i know this is tough....my daughter is 18 and recently dx'd...she absolutely freaks when others don't eat gluten because of her....but she never refuses and invitation to dinner....she says she eats to live not lives to eat....and does not want to miss out on good time because of gluten...she either eats before and orders something safe like a plain salad or just ice cream...or brings her own...i'm sure being celiac can make you feel very isolated but staying home doesn't sound like the solution...good luck..KathyB

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My heart aches for you. My daughter was diagnosed at 11 days with PKU which is a horrendous diet. It is so very hard to watch other children eat pizza and cake and the like and your poor kid is left out. PKU kids cannot have wheat flour, simply because of the protein in it. PKU is an inherited inborn error of metobolism. They lack an enzyme which takes phenylanine (an amino acid in protein and a needed one!) and breaks it down so any excess can build up in the blood and cause profound mental retardation.

Anyway with that being said, sorry I knows its not celiac, I feel for you. I can only tell you what I know and that is when members of my family did this, I did not go. I distanced myself and took my child someplace with a couple of her friends instead. The zoo or a park or something. There were only couple of insensitive people in my family and they learned right quick if they wanted to see us, they better behave and learn. I am sorry if that sounds selfish.. but cannot help it. My family learned very quickly not to center things around food but around US instead. I must say I threw a couple of fits to make them realize how important it was and that NO I could not just this once let her have the damn food. :angry:

I agree with whomever said there are many things your child could have at home. But knowing that some people never change and not wanting to spout off anymore than I have already..

You can bring food with you. I invested in a very expensive stainless steel thermos and brought food with me when we could not get around it. I dont know that I would trust the highschool/college kids that work there not to contaminate your kids food. The fact that you are willling to eat with him is marvelous.

I do know how important it is for him not to pick up on any resentments you may have about the diet. Or any bad feelings you may have for your sister over this. A very hard thing to do. Try to make the other child, the party and the fun the focus, not the food. I dont know why we Americans have to always focus on the food. :(

If it were me, I would not go but I have that type of personality. I would do anything for anyone I loved, including diets and when someone does not reciprocate... I just plain get very angry. I am betting you are bigger person than I.

Whatever you decide, you are in my thoughts. Give him extra hugs instead of burgers.

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You could make him a burger on a bun and fries, then put them in those new toaster bags. Pampered Chef sells them and another place also, but I can't remember. I haven't bought any yet but they are on my list. All the restaurant has to do is heat the bags up and put his food on a clean dish. I think it would be safe since the bag is sealed. Also, the bags are reusable.

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I ate at TGIF when first diagnosed, about a month ago. They have an Atkins menu which has no/low carbs, so they are sensitive to some dietary issues. I did not have a problem having them adapt the Atkins choices for me, since I am also lactose intolerant.

It's all good! :)

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  • Forum Statistics

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    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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