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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.

Extended Family -- What If They Refuse To Adjust?
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30 posts in this topic

I can almost guarantee when my 13 yr old daughter has gotten into something while out with her friends. She bloats up, becomes irritable, wets the bed again, and can't breathe. Then comes the itching and a breakout. The really bad thing is that some extended family members don't even believe in celiac so when she is at their house they won't even attempt to accomodate her needs. Anybody else deal with that one? I can't exactly tell her she can't see her grandparents! She comes home after a few days there and we deal with the consequences for months.

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I do think you can tell her she can't see them. Both of you need to tell them they HAVE to be accomidating. Maybe you need to have a docotor sit down with your daughter and her grandparents to show the damage cheating can cause. Her health is very important and if they don't care to help her be healthy then something has to change. Maybe bring her own food or stay for only short periods of time where she won't need to eat?

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I agree, you are the parent and if the grandparents can't meet her needs then I wouldn't let her go, plain and simple. Your daughter needs to know the seriousness of this diease and what COULD happen if she continued to eat gluten, that's what I had to do with my 8 year old daughter after she cheated a few times (after being dx) at school and now she KNOWS what she can and cannot have and she sticks to the diet 100%!!

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Maybe you can prepare food in advance for her to take with her. also, you have to insist with your parents that they not give her things that her body can't handle. If they can't do this then you have to think about your daughter's well being and stop the visits. In time they will miss her and probably realize they have to change their ways!! I'm sure they will come around and do what is good for your daughter especially if they want to see her.

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I think Kristina (mysuicidalturtle) is absolutely right. You have no other choice. Basically, if they care about your daughter and if they want to have extended visits, they have to accomodate or at least, let you send food and not offer gluten.

I think the bigger problem, though, is that your daughter is in denial about it, herself. Ultimately, it doesn't matter how accomodating or unaccomodating people are if she's not going to take responsibility herself about the diet. Also, I'm not so sure that she doesn't believe that it's celiac--this would be more likely if she had no symptoms. She is probably unaccepting of the strict dietary changes that need to be made. I think that's the first and most important problem you need to deal with. If she accepts celiac, I think it'll be easier for others to.

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I've got to agree with the thought that you are the parent, and since their house is unsafe, she doesn't go there. They can see her at your place, or somewhere else, but do what you have to do to keep your daughter safe and be confident in that.

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I think celiac3270 has a valid point (who, I believe, is also a teenager?) Your daughter is 13 years old and, unless her grandparents are purposefully misleading her (putting flour in something and saying it's gluten-free for example,) she needs to take responsibility for what she puts into her body. I would make it easy for her, of course, always packing safe foods for her to eat when she goes to visit (breakfast, lunch and snack items) and even pre-screen what dinners will be. But no one is forcing her to eat what her friends are eating when she's with them or what she knows she shouldn't at her grandparents. She is making a conscious decision to eat them herself knowing how she's going to react. This is what I tell my three kids when they do this. They need to accept that this is for life and if they decide to eat something with gluten they just have to deal with the miserable consequences. I help in whatever way I can, of course, but I'm not sympathetic. (However, I'm VERY sympathetic when it's accidental. ;) )

Maybe it would be worthwhile to get her onto the teenager area of this forum? Let her see that she's not the only one out there with this. I don't think it would hurt anyway.

Good luck!

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Thanks for the input, guys. I was just really frustrated when I wrote the post earlier. You all have said what I knew but did not want to deal with. And, yes, my daughter is in denial. You would think she would catch on with my status being as bad as it is. Maybe this last time she finally has caught on. At least she is commenting about how frustrating and disgusting it is to have itchy scabby places all over her legs and face. She even lost some weight between attacks this last time. I don't know. I sure hope she gets it together. I am one frustrated Mom.

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I agree most of the responsibility has to be on your daughters shoulders. Is there a support group in your area? I know I had to make the decision myself that I was going to stay gluten free. Of course there is a difference between being an adult and being a child. I am a grandparent so it pains me to say this, but if your folks don't cooperate, they should only have supervised visits. You have to protect your child, also you need to educate her so she makes proper choices when you cannot be with her. I am looking for some videos on the subject but so far have come up empty. There is plenty of literature out there though. Just thought I'd add my 2 cents worth. Judy :(:ph34r::D:o

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My son, 13, will be 14 in just over a month has problems, not with gluten (not yet) but with cinnamon and all processed meats. He tested w/blood test as not Celiac.

He has gotten to the point where he completely avoids ALL cinnamon but he comes home from school after eating pepperoni pizza and is sick for days. He knows, it is his choice. He is chosing to eat, he has not been getting sick enough, often enough to make that decision and it is his decision. We don't use processed meats at home and we have almost eliminated cinnamon from our baked goods.

However, if they don't believe and are lying and hiding gluten, that is altogether different. I would not allow my child to go, end of story.

Another angle, my son's dad believes the processed meats bother him and sees other problems but does not see the cinnamon so my son just avoids those foods there too...

Good luck...Kate

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I think celiac3270 has a valid point (who, I believe, is also a teenager?)

Yep.....I'm turning fourteen in January.

Like I said before, it would probably help your daughter to accept it if everyone around her accepted it, too. In terms of convincing disbelieving relatives, I would suggest, if you haven't already, printing a few serious, but comprehendable articles about celiac and the risk factors. After all, they might care more if they knew that your daughter is at risk for cancers, ulcers, etc. if she doesn't start a strictly gluten-free diet. Additionally, if you have some sort of letter or paper or something in which the doctor officially diagnoses your daughter, it would be good to include a copy of this so that they can better accept that your daughter has celiac. There are many articles on the site here about celiac, risk factors, symptoms, etc. that might help. Oh, you can also print posts on the board, too, if you find one that's particularly helpful--

I'm not really sure what should be done to convince your daughter--this isn't really a matter of convincing, I guess....she probably knows that she has it, but doesn't want to.....admit it and face the consequences.

To offer a teenager's perspective--the diet eliminates all spontaneity, the limited selection of food can get really boring, and usually the things that you want the most are the worst things you can eat (bagels, pizza, etc.). It's very inconvenient to read labels and then, usually, to need to call companies. Finally, I find that I get self-conscious when asked about celiac and I feel alienated, strange, and different if I'm eating something that looks and tastes different that I brought and everyone else is eating the food that I can't eat and crave. Additionally, while other adults would often try to be sensitive to another about food, kids/teens can be cruel and might make fun of a gluten-free food or the health issue in general--though I'm fortunate enough to be among a fairly nice group of kids at school, I had a different experience at camp.

That's all for now...keep us posted :)

-celiac3270

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celiac3270 already mentioned this, but I think that it is very important. You should get your daughter and her grandparents to read up on the complications of celiac disease if left untreated or if you don't follow the diet.

Here are some websites:

http://allergies.about.com/cs/gluten/f/blniaidceliac6.htm

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#6

http://health.allrefer.com/health/celiac-d...plications.html

This may help. Your daughter and her grandparents will hopefully have a different attitude after reading up on this.

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Just a couple of short comments.

Like the others have said, if the grandparents won't adjust and cooperate with the gluten free requirements then you as the parent need to look out for your teens welfare. Perhaps this will give you a slightly different perspective:

If the grandparents had handguns laying around on the coffee tables, and a candy dish full of ammunition, would you let her spend the weekend there?

How about if they encouraged her to drink beer and wine while she was there?

How about if you knew they were involved with drugs?

What if they were child abusers?

As a parent your responsibility is to watch out for the welfare of your children. The above examples are extreme, but, if you let your child go to stay with the grandparents in the above examples, you would be risking the child's welfare. By not respecting your child's gluten intolerance and adjusting their meals during her visits, the grandparents are putting her health at risk, just as surely as if they were filling her juice glass with wine or rum, or handing her a loaded weapon. Don't put your teen in a situation that you KNOW puts them at risk.

Now, the other comment is directed toward your second post. Where you said "You would think she would catch on" and "I sure hope she gets it together." If your daughter is in denial, hoping and waiting for her to "catch on" give her room to stay in denial. Be direct, make the connection for her. Tell her "The itchy scabs on your face and legs are from eating gluten." Don't wait for her to make the connection, it took too many of us too many years to find out what was causing our problems. Celiac is a difficult diagnosis to make. You know what the problem is, lay it out for her, over and over again if that's what it takes. Please, don't sit back and hope she gets it together. She needs you, with the experience and the knowledge to help teach her. This is not something you can let her learn from her peers, or figure out on her own.

I don't mean to come down hard on you, but you do your daughter a disservice if you aren't standing up for her. Protecting her from those who don't accept the diagnosis and helping her to accept the diagnosis and make those connection, that is your responsibility as a parent.

My grandson is not showing any signs of celiac, yet when I figured out that gluten was causing my problems and got my doctor to agree that I had celiac, I wrote a letter for my daughter to give to the pediatrician. I don't want my daughter to have to struggle to figure out why something is bothering her son, and if having the info about celiac helps the doctors, then I have helped my grandson. The family history of celiac disease is in his medical records, and his pediatrician has decided that with the family history, there are certain immunizations my grandson will not be given, because they are wheat based.

I am recently self-diagnosed with an anecdotal agreement from the family doctor. Luckily my side of the family dealt with this with my grandmother, and I also have an uncle with celiac, so acceptance isn't a problem there. However, I will see how things go with my in-laws over the holidays. We've tried to explain it over the phone, but I really don't think it has sunk in to my mother-in-law yet. So, I am heading there for a week long visit, with lots of my own food in tow, at least we are driving and not flying, so taking stuff with me won't be as much of a problem.

Being open and up front is the best way to get the message through. Your posts here show you are concerned for your daughter. I may have been off-base with how I read your posts, but I really felt I needed to reinforce the responsibility to watch out for your child's well-being and helping her face her health issues.

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Hi celiac3270-

I have to say that I am so very impressed with how you carry yourself on this message board. My son is 8 years old, just diagnosed in October, and I hope he turns out to be a lot like you! :)

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Note to celiac3270: Before you read my post, read the one before mine. Thanks.

Hi All

I hate responding to posts about the raising of children as I do not have any of my own....but I've raised a few in my time.

I just want to say that people don't grow up (mature) automatically overnight. The teenager doesn't go from say 16 to 17 and wake up the morning of their 17th birthday and say "I'm an adult now, so every decision I make will from now on be a mature one." There's a lot of "slip-sliding" until the twenties (as I am sure we all can recall).

We all know the teenager who is 18 but acts much younger. The 14 year old can for all intents and purposes understand a concept, but isn't mature enough to put it into action or to sustain the action (i.e., keeping a job, or making sure that the dog gets walked twice a day, etc.). The adult, whosoever, such as parent, teacher, relative, neighbor, etc. must be there to be the "cheering" section -- "Yes, you can do it!!" "Yes, it's hard work, but you can do it!" and the adult must be there for the times the teenager reverts on those occasions to being a child - then the adult must be there to chastise, correct, maintain discipline with loving kindess and concern. Part of the adult's (parent and grandparents & other adults in society) responsibility for support is to provide the teen with the tools necessary to get the job done - the tools for his future - tools for the mind, body and spirit. They are: providing books and tuition for school, providing nutritious food and a safe homelife, instilling spiritual principles such as concern for others, etc.

With this being said, my feelings are that unless the extended family is willing to support you (the parent) in fulfilling your responsibility, they should not be put in a position of authority only to destroy what you are trying to build. And teens being teens, asisde from celiac3270 who is wiser than his years, will slip into "child mode", especially if they are in a situation where the adult authority is allowing them to just that.

As to the teen and teen-activities: well, I agree with celiac3270, being gluten-free is ripe for isolation . Bad enough teens use cigarettes, alcohol, etc. to fit in, I can't imagine how much worse than having a gluten-free diet around others who can eat anything. The teen would have to be a saint not to cheat on the gluten-free diet when the teen is with their friends.

You have a 2-front problem: 1) Confronting the other adults in your family and 2) Guiding your teen to make proper food choices when out of the house.

As to #1, those adults must be reprimanded gently for the last time. Perhaps one or more of them could attend a support meeting with her (perhaps just with her and you stay home, in this way they don't feel like you are watching over them). If they love her, they'll do it. If they don't then I don't see a choice other than to distance her from them until she acquires more maturity (however long that takes).

As to #2, this is the more difficult one. At least with the adults you can bar her from going there, but you really can't forbid her from interacting with people her own age. I would have to defer to celiac3270 on this one. If your teen is slipping off her gluten-free diet when out with friends and ending up feeling sick, then I am sure she knows what's she's doing wrong. Can the "gang" of her and friends meet at your home every now and then so that she can have control of the situation? Maybe some of her best friends can go to support meeting with her so that they can have a better understanding of her and her life?

I just hope it all works out for you as it's not easy.

D.

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:D i wanted to let everyone know about christmas with my kids :lol: --i fixed the meal sunday at my son, jeremy's--we had cornbread stuffing, turkey, ham, mashed potatoes, yams, corn, and 2 gluten items--green bean cassorole and rolls----jeremy used to say to his brothers and sister-- :( mom is just being stupid (at the time, i had MOM printed on top of my butter dish, jar of peanut butter, the likes)i told him then--you can use it, just dont double dip ;) -----anyways--after 3 yrs--- :D i cant tell you how many times i was asked sunday, "which dish of butter is yours mom?" :) "which bowl of stuffing can we have?" (there was a bowl that had been baked in the turkey and one that was baked separately, so both were gluten-free)-- :D it was very refreshing to find that they all finally understand the importance of protecting me from gluten--they still dont all understand everything that gluten is in--jeremy called from the store and asked, "which rolls can mom have?" :rolleyes: but he is getting there--- :wub: deb
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Congrats! That's great progress, and a big "thank you" to him for at least paying attention to it for you!

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That's great! :D You are making headway--that must make you feel good! :D

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Hi -

I'm sympathetic to hear that your parents "don't beleive in celiac disease". My own general practitioner "doesn't beleive in celiac disease!". Luckily I have a gastro specialist who does. I've found that the hardest thing about being diagnosed is that people don't take my condition seriously, mostly because I can't come up with an appropirately horrifying answer to the question "well what happens if you eat wheat or dairy?" I feel like when I DON'T answer "I'll die", people get bored and assume it's not that serious. That's a cynical way to look at things, I'm sure - but I sometimes think about it that way. :D

I can't add much to the excellent suggestions others have made about supporting your daughter and helping her deal with her condition, but I do suggest that you tell people (as I do) that she has an allergy. In my experience, when you say allergy, people think about peanut and shellfish allgergies and take you much more seriously.

My two cents.

the captain

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captain, what if (in the case of someone with diahhreah as a symptom) you use the reply "let's just say that YOU wouldn't want to have to clean up the bathroom afterwards if I got contaminated in your house." (followed up with a "knowing grin"...)

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captain, what if (in the case of someone with diahhreah as a symptom) you use the reply "let's just say that YOU wouldn't want to have to clean up the bathroom afterwards if I got contaminated in your house." (followed up with a "knowing grin"...)

:lol: I just love your reply! What a brilliant come-back.

I haven't really got a fantastic answer for this problem with your parents, other than to say that they should be ashamed of themselves to treat their own granddaughter like this. :angry:

You are doing a great job in teaching your daughter to be sensible about her eating, and they should support you, AND HER, in this.

It makes me mad to think of what you have been through. I sure hope that the situation improves drastically and that they get a bit of sense in their heads.

If not for themselves, then certainly when it comes to your daughter...THEIR GRAND-DAUGHTER...sheeeesh!

Do they realise that eating glutenous food is life-threatening for her?

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:lol: love that answer tarnalberry-- :lol: just love it--the grin, especially---i tell people that gluten is not life threatening to me, but in time is deadly--i tell them the cancer scare part of celiacs :( and that sometimes is enough for them--sometimes i just stomp my foot :angry: and say, "I cant have it and that's it!" :angry: ---when my sis goes to a restuarant, she will tell the waiter or waitress that he/she doesnt want to see what happens if she gets glutened and neither will the other patrons :D ---sometimes we have to use scare tactics just to get our point across and that's too bad--people should just listen to us and believe us on face value :) ----really, come on <_< --would anyone give up the foods we have if we didnt have too--- :P i would love to beable to pop anything in my mouth without worry--what a dream that is now :P --deb
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Hi,

Sadly, sometimes a Celiac's parents even refuse to acknowledge the problem! My grandson's mother decided that Dakota didn't really have Celiac, even though Enterolab confirmed his intolerance of grains and milk & dairy, after he was projectile vomiting his formula and having 12 diarrhea diapers a night when he was 3 weeks old.

I babysat him 5-6 days a week his first year of life, and taught his family what to feed him (I also have Celiac). When his mother decided he should go to daycare at one year old, she also decided that he didn't have Celiac. He was thriving by then, so she and his father have been feeding him every food under the sun for the past 6 months. A blood test they had done didn't show Celiac. I pray that he will be healthy and well throughout his life, but what can I do? I can only bring myself to feed him the foods I know are okay for Celiacs, so I do my part that way, and I love him endlessly. Welda

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Sorry that I hit the post button twice here. Welda

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sometimes we have to use scare tactics just to get our point across and that's too bad--people should just listen to us and believe us on face value  ----really, come on  --would anyone give up the foods we have if we didnt have too---  i would love to beable to pop anything in my mouth without worry--what a dream that is now  --deb

I know.....good points...luckily, nobody important in my life is a disbeliever :). The end of your post made me think back, too, to the days where I would pop anything in my mouth that I wanted or would order anything off a restaurant menu based on what tasted good, or when going to the grocery store with my mom, just browse and look for something new that looks good. Now I realize how little people appreciate that and how little I did, too.

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Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
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