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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

My Family Just Doesn't Get It
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15 posts in this topic

I'm so tired of my family not understanding that I need to be extremely careful when I eat away from home. I am constantly getting my balls busted and its hurtful to me.

Thanksgiving was great yesterday, however, I was unable to eat the turkey because it was stuffed. My aunt told her sister-in-law (the host) about my issue and if possible to make the stuffing separate..so what does she do..she makes the turkey with the stuffing inside it. Thankfully there was enough great food and I was more than satisfied but it just annoys me how people can be so unaccommodating.

The other day my aunt put some gluten free appetizers out but all the guests were eating crackers and then touching the gluten free stuff, so i couldnt eat those either and as soon as i stopped eating my aunt asked what was wrong, and i told her about the cross contamination issue and she got irritable and told me I have OCD - then my uncle and step dad told me I was being crazy and neurotic. There was a marintaed shrimp dish and my stepdad told me to try..so i asked what was in it and he said "oh Jason for gods sake just live your life"

Im getting really sick of this..why cant people just respect me and understand how serious my issue is?

My mother just found out she is gluten intolerant and has made an effort to stay strict on the diet, but it was her 15th anniversary and my aunt & uncle got them a cake so my mother ate the cake. I was also out with my folks last week and my stepdad snapped at my mother cause she didnt want to try something that was in contact with bread. I can keep going but i think you get my point here.

My time with family should be enjoyable and instead it just aggravates and stresses me out. what else can I do?

Again I almost wish I had a confirmed diagnosis of celiac..i feel it would be easier to convey my problems and concerns to people. Right now im in the grey zone...I know gluten is a problem but i may not have celiac or I might

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2 thoughts, Jason:

1. As time goes on, they will get used to your "odd ways". You will probably have to bring your own food, but they will ignore it.

2. We have some difficult relatives I do not want to spend time with. Figured we had to do either Christmas or Thanksgiving but not both. Made other plans for Thanskgiving. Went to Disney, Wash, DC, etc. 1 holiday I didn't have to deal with them.

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Im getting really sick of this..why cant people just respect me and understand how serious my issue is?

Well there's your problem. Those two things are totally unrelated. They can (and should) RESPECT your choices. But they don't have to (and may never) UNDERSTAND them. For people who have a hard time *understanding* the issue, I find it's much better to ask them NOT to try to understand, just respect my decisions even when they disagree. That's a common enough statement/sentiment in other situations that they tend to (and who cares if they roll their eyes or think I'm looney).

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You have come a long way so do not let your family's lack of understanding bring you down. You know what you can and can't do. When they ask why you aren't eating say you just couldn't eat another bite or you are saving room for (fill in the blank) later (preferably the yummy dessert your brought). You have proved to yourself that eating gluten free keeps you feeling better.

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Family's can be so unkind, particularly around food issues. It is around all that social, nurturing, sharing stuff. They may also feel threatened by your diagnosis. They may be afraid they have the same or similar issues but don't want to deal with it.

If they want you there they need to be more caring and accommodating. But even if they tried initially they will make umpteen mistakes since the CC issues are so complicated, including baking things in an oven that needs to be cleaned using the self cleaning cycle for half an hour and baking on surfaces that also went through that cleaning cycle--or buy new cookware, use new boards that are never used with gluten etc.

You can see how complicated this could be, eh? So they are startled and shocked and in denial about your condition.

Meanwhile that doesn't help you. You need to bring your own food and/or eat beforehand--or just don't go to these food oriented shindigs--as was suggested. Maybe Christmas would be easier than Thanksgiving, just in and out with gifts? and a little chatting? Simply say you have plans elsewhere for Christmas dinner.

In time perhaps your relatives will realize how much healthier and happier you are than you were (and perhaps they are??) and start to put two and two together and become more aware and supportive.

One word of warning--don't push with them, insisting that they too may have this condition. I did and they all ended up thinking I was nuts which increased their denial. Its better to lead gently if and when they become interested. For me I now say very little to them unless their actions affect me unavoidably or someone I care about. It works much better...

Bea

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Well I can't not go to family functions and am not gonna isolate myself from the world. Last night people got on my nerves but I was still able to have a great meal without any problems. I guess i just have to cool my jets and not get so worked up when people cant accommodate me :)

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I know how you feel. Even though my family has been very understanding (but, then, a third of them ended up being diagnosed with celiac after I was), some of my friends have either acted irritated or thought my condition was ludicrous or all in my head. My boss even made jokes in front of me, rolling his eyes when I asked questions of servers at restaurants. Then a glutening caused me to be unable to absorb iron, and I was on intravenous iron once a week for two years. The boss didn't find that too funny, since I had to take time off from work each week. I was well for a few years, and then I got accidentally glutened at a potluck eight months ago. A month later, both of feet suffered from stress fractures. I limped and wore a walking boot on one foot for months before I figured out that the problem was due to floppy tendons caused by malabsorption of zinc. When people see you walking in pain for months, they begin to put 2 and 2 together.

You can use these types of situations as examples of what can happen from a simple, one-time glutening. As we become more sensitive to gluten, parts of our intestinal lining can be destroyed in a heartbeat by cross-contamination...and then we're left with disabilities, either temporary or permanent. Explain to them that malabsorption of calcium could cause your teeth to break and osteopenia, malabsorption of Vitamin A could lead to night blindness, malabsorption of Vitamin K could cause you problems with clotting--you get the idea. People need to have a strong visual aid in understanding how debilitating celiac can be. I think most people think that you probably have a little tummy-ache that goes away by the next day. They don't understand that we feel foggy-brained, exhausted, headachy, and can end up with DH and a destroyed intestinal lining with the many complications that come with it.

I believe people need to be educated and that we must act as advocates so that the undiagnosed will seek diagnosis. I realize that you've been advised that people can respect you, but they may never understand your problem. I feel it's the reverse: You CAN make people understand, but it's up to them if they will respect you. I have many friends and family members who respect my condition and are supportive--I don't need to be around people who, once they understand a medical condition, continue to mistreat the affected person. Most people, once educated, are much more understanding and respectful. Good luck!

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great suggestions thanks! fortunately or unfortunately i dont seem to get the violent symptoms from glutenings that a lot of people do, but i still try to play it as safe as I can. I eat out frequently but am extremely careful and always go to "safe" restaurants - im sure ive been exposed multiple times but i never really know for sure when. with my situation all i can really do is the best i can

a glutening from CC shouldnt cause the extensive damage that you describe. if that were the case it would be easy to diagnosis celiac after doing a low level gluten challenge but thats not the case and most challenges require 3 months to a year of eating gluten in order to get an accurate diagnosis.

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I am sorry you have to deal with family who doesn't understand. I an fortunate (and thankful) my family is very supportive. They still don't get all of it, but they try. My sister's daughter has a peanut allergy. My sister's MIL decided that her daughter (just turned 3) doesn't think it's true. We are concerned that she will "test" her theory. Can you imagine what that could look like in such a little one?? You sound like a patient tolerant man. Use this space to vent...you need some outlet! :rolleyes:

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I completely understand your issue. I'm away in college this year, so cooking for myself is fine, and the woman whom I'm renting a room from, her boss and his whole family have celiacs, so she understands. Coming home from school is awful for me. My parents get it, but my sister who still lives there doesn't. We don't get along, so she really does things to spite me and thinks I'm gluten free to be a pain in the butt to everyone around me. So, after the Thanksgiving incident last month, I begged my mother not to let her cook anything for Christmas, cause I'd actually like to be able to have a meal. My sister cooked 5 things; stuffing, casserole with croutons, potatoes with gravy, turkey and the pie. I could have the turkey. And of course she made a huge deal about the fact I wouldn't eat any of it. Pretty much said I ruined thanksgiving for "being difficult". That's all she thinks is that I'm being difficult. Like I'm going out of my way to be a culinary inconvenience to everyone around me. It's really not easy to have people think you're doing things out of spite, when really you're trying to save your own life from constant pain and eventually getting intestinal and/or stomach cancer for not being on a gluten free diet.

I think it's hard for people to understand because it's something that's relatively new to the medical and culinary communities, and there are some people lucky enough to not be allergic to anything or intolerance issues.

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I understand the thoughts in this thread completely. I've had food allergies for years and recently diagnosed with Celiac. A cousin of mine always made comments at get togethers that "You're such a picky eater, God". Now I called her and said you thought I was a picky eater before it's going to be worse now. But when she looked up Celiac adult symptoms online she emailed me and said she was getting herself tested because she has almost all the symptoms. Hmmmm picky eater? Another incident just happened, I started dating the brother of a good friend (not a good idea in the first place I know now) but when this 'gluten thing again' as they refer to it got in the way of their plans, I wasn't invited and was told right out 'You're not going, it's that gluten thing again'. Needless to say he is no longer in my life and she has taken herself out of my life choosing to ignore me instead of deal with it. My immediate family has been really good, my adult sons, my mother but in that realm my brother who I think has it also refuses to eat with us. For Thanksgiving he said "You know I can't eat that stuff, I'll be sick for 2 days".. he has all the same symptoms I have but refuses to acknowledge that this is genetic... Some people just live in their own little comfort zones and can't stand when that zone is challenged. Those that think this is a picnic and an attention getter should live a day in our shoes with celiac. I had a dear friend say "you've lost so much weight and you look so good, you have the body I wish I had" I told her "you can have it anytime you want but you get the insides along with the outside" LOL she said oh no thanks then..

Gotta love the humans we surround ourselves with huh? :P

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I agree with the posters who have said make sure you feed yourself before you get somewhere. May I speak from the other side?

My mother is gluten free and diabetic. My daughter age 7 is gluten free/dairy free as well as myself. My dad and my husband are the long suffering spouses. So this Thanksgiving my challenge was to prepare a variety of gluten free meals that would appeal to the gluten-ous eaters who are very good at the eye roll, believe me, the 7 year old celiac and the diabetic celiac. And myself. I felt like everyone was doing pretty well, but I just couldn't please my mom. I tried to make food that everyone would eat, and she could piece her own meal together to balance the carbs, but every time I put something down she'd go into a long drawn explanation of why she couldn't eat it. I just thought, Lord help me I hope I don't come across like that to people. I mean no offense here but it's very hard to plan a party that's "safe" for everyone.

I sort of just take the approach that I'll take care of myself and my daughter, and please host or hostess, just worry about yourselves and your other guests. That said, I have to say for the young sons and daughters living at home, I think your family's kitchen should be gluten free. To me that's another issue.

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I'm so sorry you had a such a hard time, I think probably a lot of people with celiac and/or food allergies/intolerances have rough holidays. Wish I could have all of you over for a safe gluten free potluck dinner. The sad thing is, It's not just about the food, food is such an integral part of our social activities, a form of nurturing, and that's what is hurtful. Our family of 4 opted to cook and eat our own thanksgiving dinner, then bring our gluten-free/dairy free dessert to socialize for an hour or so. My extended family expect us to tolerate vegetarianism or other quirks of their own but can't be bothered to accomodate our "lifestyle" necessitated by medical fact. It's crazy. I'm hosting our holiday party as a gluten free cocktail party to do my part to educate but also have at least one holiday event where I feel completely safe to enjoy myself!

Hang in there, try to find a gluten free support group maybe? It's so wonderful to be around people that "get you" and a huge relief to me to attend my group every month.

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I'm so tired of my family not understanding that I need to be extremely careful when I eat away from home. I am constantly getting my balls busted and its hurtful to me.

Thanksgiving was great yesterday, however, I was unable to eat the turkey because it was stuffed. My aunt told her sister-in-law (the host) about my issue and if possible to make the stuffing separate..so what does she do..she makes the turkey with the stuffing inside it. Thankfully there was enough great food and I was more than satisfied but it just annoys me how people can be so unaccommodating.

The other day my aunt put some gluten free appetizers out but all the guests were eating crackers and then touching the gluten free stuff, so i couldnt eat those either and as soon as i stopped eating my aunt asked what was wrong, and i told her about the cross contamination issue and she got irritable and told me I have OCD - then my uncle and step dad told me I was being crazy and neurotic. There was a marintaed shrimp dish and my stepdad told me to try..so i asked what was in it and he said "oh Jason for gods sake just live your life"

Im getting really sick of this..why cant people just respect me and understand how serious my issue is?

My mother just found out she is gluten intolerant and has made an effort to stay strict on the diet, but it was her 15th anniversary and my aunt & uncle got them a cake so my mother ate the cake. I was also out with my folks last week and my stepdad snapped at my mother cause she didnt want to try something that was in contact with bread. I can keep going but i think you get my point here.

My time with family should be enjoyable and instead it just aggravates and stresses me out. what else can I do?

Again I almost wish I had a confirmed diagnosis of celiac..i feel it would be easier to convey my problems and concerns to people. Right now im in the grey zone...I know gluten is a problem but i may not have celiac or I might

Hi, I can totally relate. This is my 2nd year being gluten free(among other things) and things are not better. I get snide remarks, comments, eye rolls. It hurts my feelings too. They think I'm overprotective of my DD(celiac) and of myself, they say things like "oh just eat it, you'll be fine." My sis says "you used to eat it and you were fine." For the most part I try to ignore these comments.

It makes it more difficult because my Mom who has gluten issues continues to eat that stuff. It doesn't help my case.

Bring food or eat before you go anywhere. Don't let them pressure you to eat the food they made if you're not comfortable with it. I do think they will get better as time goes on, they'll just get used to it, or get over it.

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Here's how I solve the "holiday dilemma" - I bring my own food in one of those reusable grocery bags, just in case there is nothing I can eat. I then explain to the host/ess that I don't want to cause them extra work by asking them to cook according to my dietary restrictions, so if they don't mind lots of questions about each dish, I will ask and see if there is anything that will work. If they seem unsympathetic, I just eat what I brought with me. If they don't mind the questions, I eat the dishes that I can. I usually talk to them before the event if I know the person well, if not, I will speak with them when I come in. Yes, it's annoying that people aren't always willing to accommodate, but on the other hand, it's not always possible to accommodate every guest with a group that has multiple food allergies, sensitivities and dietary restrictions.

I'm sorry you have to deal with family that is unsympathetic. That's very difficult.

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