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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.

Just Bad Behavior Or Gluten Reaction?
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17 posts in this topic

My 10 year old, diagnosed 1 year ago as celiac, only has behavioral symptoms from gluten. Before diagnosis she was off-the-wall irrational. We were so thankful to find out that she was a celiac and her behavior improved dramatically almost immediately. However, there appears to be a slow decline in her behavior in the last few weeks. Does one become more sensitive to gluten the longer off of it?

We have made every effort to be 100% gluten-free, but there have been mistakes and possibly CC as we are not a totally gluten-free house. Despite our efforts, she showed a very slight positive on her TTG when tested a couple of weeks ago. We met with the GI and he said that he felt that the new cheaper test that they are using in Calgary is too sensitive as he is seeing lots of weak positives.

She experiences NO other symptoms. Her behavior is awful, but then again, kids do need to have bad days, but hers are over the top. I feel really badly when I get angry re her behavior as if it is a gluten-ing, she has no control over it.

Today she had a gluten-free rice brownie from a natural grocery store, and her behavior tonight is terrible. She pushes and pushes and pushes the limit and I try and try and try to remain calm, but I eventually lose it. She opened all of the cupboards in the kitchen and dumped everything on the floor -- cleaners, food, dishes, etc. and then challenged me to do anything about it. I had it, screamed at her to get out of my face and sent her to bed. She is now screaming up in her room, keeping her siblings awake. This all happened because the PJs she wanted were wet in the washer.

How can I tell the difference between a glutening and bad behavior? How can I stop her from pushing and pushing -- she keeps doing it despite warnings that she has gone too far. She can't control herself. I hate to say this, but I wish she did get a stomach ache rather than smashing her fist into the wall, and screaming for 2-3 hours.

I know the answer is a 100% gluten-free house, no treats outside of the house. I also don't want to make her feel even worse that her sister, Dad and myself can't have gluten (her little brother is on a gluten-free diet but we are about to challenge that because he has not grown in the 6 months on the diet). She feels really guilty that we can't be like a normal family and eat dinner out, or order in a pizza and a movie.

I guess I just want to verify that one does become more sensitive to gluten the longer on a gluten-free diet. Is that correct?

Thanks and I just had to write -- a bit cathartic I guess as no one I know understands what we go through when my DD has had gluten. She is now quiet and hopefully in bed.

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There is a good possibility that she gets glutened in your house. It is also possible that she cheats, since it is easy to get her hands on gluten food, if it is in the house! It would be so much better if you made your house gluten-free.

Your son might need to be dairy and soy free before he will improve (if he eats/drinks those).

Also, is your daughter dairy free? She may need to eliminate dairy and soy as well. Dairy can cause all kinds of emotional problems, too.

If it is really true that your daughter can't control that awful behaviour, then it isn't just 'bad behaviour', but a reaction to food she eats. Meaning, punishing her won't do any good. But of course, sending her to her room may be necessary to keep your sanity.

I feel for both of you!

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It really sounds to me like a glutening. I really know where you're coming from- it's so hard to tell when the main symptom, or only symptom, is behavioral/emotional. I'm in the same boat with my younger son. Sometimes I feel like throwing my hands up and screaming, "I just don't know what's going on anymore!!!" It's so much easier to tell with my older son, who has GI reactions...

A couple things I can tell you.

1- Yes, many people do become more sensitive to gluten after they've eliminated it. Not everyone does, but it seems like most do. I know for a fact that I have.

2- Last month, all three of us seemed to be showing low-level reactions over a period of a few weeks. I tore my kitchen apart, scrubbing every surface, and replaced our gluten-free toaster again. The symptoms immediately started to abate. I expect this to be something that may be necessary every so often. We are not a 100% gluten-free house either.

I would take what the GI doctor said with a grain of salt. I've never heard of a Celiac blood test that's too sensitive! I suppose if it's significantly more sensitive, then it would skew the results, since the result parameters would have been set for a less sensitive test... But assuming that a rash of weak positives is because of a test that's "too sensitive" seems like a leap to me.

(((HUGS))) Vent here any time. There's a lot of us who know what you're going through.

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Just want to add in from the perspective of a mom with some difficult kids, albeit not quite that difficult. My middle child was eventually dx'd pdd-nos (mild autism) and bipolar and is now on 3 heavy drugs. I really wonder if getting to the bottom of his food issues could have prevented the medication, but this is all new to me (i'm curently waiting on his first round of tests)

I know I often have those doubts . . .like maybe its just the way i raised him, thats why he has no self-control, no organizational skills, a short temper . . .but most days I'm more sane and I realize that this is who he is and i've done the best I can to raise him with love. Its so hard to find that balance between effective discipline and understanding with a specail kid. So sympathy to you, at least

When my son is overboard (which again, isnt QUITE that bad for him), one thing that often helps is epsom salt baths. They are very calming and detoxing. The other day he thought he'd broken something which he'd bought with his b-day money after wanting for a year, and he was just screaming and crying and wanting to die . .. he yelled a few times in the bath, but calmed down a lot faster than anything else.

I agree you have to do your best for your sanity and the rest of the family, but I try to remember that when they are out of control . . . they are out of control, no amount of punishment can stop it. The best you can do is try to find a way that YOU can help them calm down so that there is the least disruption for the family.

frustrating that a 'gluten free' item caused so much trouble, huh

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My 9 year old's behavior changes dramatically after getting gluten or milk. After gluten, he becomes paranoid, anxious, cries at the drop of a hat, picks on his sister more, has angry outbursts and sometimes wets the bed. It is all irrational behavior for a nine year old. He doesn't have digestive symptoms. We are going through it right now and I have been showing symptoms also. I am going to do what the other poster said about wiping down my kitchen really good. Ughhh!

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hi,

you have my sympathy. Honestly, this reminds me of me at that age some. I would lose control. It was terrible. I knew I was being a brat but couldn't stop. Eventually it mellowed out. I also had depression, anxiety, D and vomiting, joint pain. Now I think I was gluten intolerant back then, but no one realized it. If it is a reaction, she can't control it or make it stop, it will run its course. Usually my strong emotional reactions subside when a different hormone kicks in. I feel these changes in me. It is so weird.

I agree that she may be cheating. Or she was accidentally glutened or cced. check the brownie recipe real close. Or maybe it is something else that is now showing up.

good luck.

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Wow, your daughter sounds just like my 8 year old..i've posted several times about her behavioral issues. I think if you're like me, you KNOW when it is food related behavior versus just regular bad behavior. The food related behavior is so overboard and irrational and uncontrollable. Before we diagnosed gluten problems, I took my daughter off all food additives, MSG etc and that did help a bit. Now, after being Gluten-free Casein-free for 4 months, her behavior is so much better it's like night and day. And if she does have some gluten or the other things that cause her to lose it (dyes, etc) she will act out, but it lasts much shorter (versus the 3 hour demonic tantrums I was dealing with last summer). NOw I can always pinpoint what she had. You need to keep food diaries to make the associations. What I do is write down what she ate, time, and behavior that day. Over time, you can see the patterns. But, when it's ingredients like dyes etc., you may not see the connection.

So she had a brownie, i'd look at the ingredients for other chemical additives or preservatives...or actually i've noticed that I myself have a problem with brownies I think due to the high cocoa content, but i'm not sure. When my daughter has dairy now, her reaction is physical, usually a headache, so that makes it easier for her to want to avoid it. The gluten and food dyes, aspartame, and MSG all cause behavioral issues. In her digestion, her stools are definitely softer and more frequent. But if she eats gluten, she does not get diarrhea or pain.

The thing I do when i'm starting to lose it when she's acting out is to ask her what she ate that day--when we figure out it was food, it helps her to make the association and it also helps her to calm down as she realizes it's not HER being "bad", but chemicals poisoning her brain. I think the main reason some kids have behavioral reactions is due to having a leaky gut...holes in the intestines allowing molecules that shouldn't to get into the blood stream and travel to the brain. So what i'm now researching is how to heal the leaky gut...beyond eliminating allergens there are things you can do to strengthen the "tight junctures" of the intestines, such as probiotics, enzymes etc. I just bought a book that I haven't read yet, but it looks excellent called "Digestive Wellness for Children" by Liz Lipski ($13 on amazon). Another resource for info on dyes and chemical additives is the FEingold Association (think i'ts www. feingold.org, but you can google it).

It's so hard for these kids...they feel so different and left out of stuff...my daughter cries regularly and sometimes even says she wishes she was dead because of these food issues..but she's still adjusting. The main thing i'm trying to do is get her to take ownership..to make the associations between eating that bright red candy and then having a meltdown an hour later so she can make good choices for herself. We do regularly make gluten-free treats that she can have and that helps. And I emphasize how many foods we can still eat. (it does make it easier I think that we are both Gluten-free Casein-free so none of that stuff is even in the house). We also pray alot!

hang in there...hopefully we can find some friends for our girls with similar issues...I really think that would help too!

Liz

p.s. since our daughters are so similar in their reactions, please feel free to email me personally.

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Had to reply to this because I can relate so well! This past week has been horrible with my 14 year old and it all made sense when I found a cracker wrapper from Wendys. The whole house is gluten-free except dh so the only gluten in the house is crackers from wendy's and croutons from when we order salads. So finding a cracker wrapper or anything else gluten related is pretty good evidence someone cheated.

I kept asking her if she ate it and she denied it for a long time until she finally admitted it. It's like she loses her impulse control and becomes irrational just like you describe. We were having issues with her, but for the last month she's been great and then it was like someone flipped a switch and she was back to all the old stuff albeit not as bad as before. We pulled her out of school and she's been doing it at home so she's been doing much better as far as cheating. At school it was so tempting (although that's not why we pulled her out) so we have a good baseline of what she's like when she's truly gluten-free to the extent that if she goes somewhere and cheats it's really obvious. Dh calls it Dr. Jeckle and Mr. Hyde. Tantrums are bad, but when it's a 14 year old it's awful. When she's back to normal she can look back and realize how bad it was, but not when she's in the moment.

I posted this before under a different section, but we use a supplement which really helps when they're like this. I have a link to my website in my profile and I'll change it to that product page so you can see what it is if you want. I posted about it before when I used it for my youngest after she had gluten and I was amazed at how well it worked. I used it last night for my oldest and it truly helps. My youngest was outside when I gave it to my oldest dd so she didn't know I'd given it to her and when she came back in she asked if I'd given her one because she said she was acting much better. Amazed me that she could tell such a difference that she asked if I'd given her one. My youngest actually even asks for them now if she's been exposed to gluten and is acting up. I never in a million years thought that would happen because she hates taking it so that says alot. I've taken to crushing them and putting it in food for her and that works well. I use it myself if I've had gluten and while it doesn't take away the reaction it does help with the whole being on edge and I'm able to have more self control. I actually carry these in my purse so if we need them while we're out I have them. The only thing is I don't think you should really use them if you have adrenal issues since they block cortisol. When I posted this before there were some people that posted back being very skeptical, but we've had great results with it. It's not magic and doesn't suddenly make them back to normal, but it does take the edge off of it if YKWIM. It also does not help with any other aspect of glutening, just that one.

My question to you and anyone else who will answer is how long before the behavior totally passes? She had the crackers on Monday and she's just now starting to get better although still a pain. My other daughter seems to take a around a week. Does that seem about right?

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I can understand the emotional meltdowns that come from this dx. My daughter is only four but from the time she was 2 1/2 to 3 1/2 her behavior was so awful I became really depressed and felt like a terrible mother. I just couldn't believe this was how my child behaved and nothing I did made any difference. Then we figured out the gluten-free thing.

When she was glutened badly a few weeks ago it took approx 3-4 weeks for things to get back to normal. But we haven't been doing this for long and I have heard the symptoms are most severe when you first eliminate and then after 6mo to a year things aren't quite so bad when you are glutened (or atleast we can hope).

I know for my dd sugar seems to be the worst culprit. Gluten gives her diahrrea and she can't control her bowels :( . Sugar or food dyes make her a complete nut. Hysterical laughing, aggression, throwing and destroying things. I thought for a bit that natural sugars would be ok, they are not. My sister tapped the maple trees at her house and was letting her drink the sap after it was partly boiled down. So it was weak maple syrup. My dd went out side after a shot of syrup and pooped in front of the stairs. Served my sister right. If I fed her son sugar of any sort I would have heard about, she's a food nazi by nature, not because of any specific allergies. Sorry, that was a bit of a vent.

I bet even if the brownie was gluten free, the cocoa and sugar are enough to send her for a loop. Plus isn't ten when girls start getting emotional?

Good Luck to You

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hi, This is all so informative. As I said before I was one of those kids who lost emotional control at times. Now my daughter can be so cranky and moody. She is 7. Here brother was easily angered when littler then her, but grew out of it. I guess I thought she would to. I am awaiting her enterolab test. Her tTg antibody test came back negative. I am taking her off gluten. I hope this is the answer. Cause if not I'll have to keep searching or I just have a brat for a daughter. But I think it is gluten. She doesn't have digestive symptoms, just emotional, behavioral, mouth sores, delayed growth.

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Thanks everyone for the support and relies.

I honestly know that my DD would never purposefully cheat, eating something she knows contains gluten because she does hate the way she acts on gluten. When she was off gluten her first two weeks, she stated that she was "happier" and she was. She feels so much better and happier off gluten. However, she is somewhat naive, as am I, about CC and about flavorings, spices, purchasing gluten-free baking, and I've never even considered dyes. I'm now paying much more attention to flavorings and spices and won't allow her anything unless we check it out.

Our house is mostly gluten-free. I have toast in the am, with a different toaster and butter. My husband will make gluten pasta, which I really don't understand as corn pasta tastes the same. No gluten baking in my house ever. But I'm sure the toast crumbs are deadly in hindsight and will scour the kitchen and be much more vigilant about crumbs. I baked up a storm today, so no more goodies from "mixed" bakeries when we are out.

I really like the idea of a calming bath, and just suggested that to her even though her behavior was great today. I'm going to buy her special "freaking out" salts and encourage her to take a bath regardless of the time of the glutening.

I haven't ever investigated other foods and will follow up on suggestions.

And the most important thing I learned today, is that my daughter is not the only one. Why oh why do the medical experts not investigate and research behavior?? My pedi GI still believes that my DD's behavior is all in my head, that she is just having a "little tantrum", not the off-the-wall irrational behavior that comes with gluten.

I also need to change my mind set about these episodes. She can't control them, much like if she had an accident in her panties from gluten. Not her faulty, we just need to learn how best to deal with the behavior.

Again thanks for the support. I think that everyone I know is sick of hearing me speak about my DD's behavior when on gluten, it is great to have this board for solidarity.

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My pedi GI still believes that my DD's behavior is all in my head, that she is just having a "little tantrum", not the off-the-wall irrational behavior that comes with gluten.

If your daughter gets glutened again be ready with a tape recorder and discretely let it record her behavior. Make an appointment and make the doctor listen to the whole thing. :o

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LOL, that's hilarious! I think i will do that for my daughter so that she can hear what she sounds like. I think if she heard it when she was totally normal, she might realize the extent to which this stuff hurts her. Sometimes it seems like in her memory, she was just really mad at me...she doesn't remember the perseverative and repetitive talking or the irrational responses at all. I'd also like to sometime play such a tape for my relatives who think I blame food for everything--I totally know the difference between my daughter's regular acting out and this kind of irrational psycho alter ego behavior!

If your daughter gets glutened again be ready with a tape recorder and discretely let it record her behavior. Make an appointment and make the doctor listen to the whole thing. :o
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Thanks everyone for the support and relies.

I also need to change my mind set about these episodes. She can't control them, much like if she had an accident in her panties from gluten. Not her faulty, we just need to learn how best to deal with the behavior.

Some of the most difficult times in my life where when my daughter was having explosions at about the same age as your daughter. They were terrible - I remember picking up my toddler and locking the two of us in the bathroom, singing to him as loud as I could to drown out her screaming and banging. I can't say that they were due to gluten at this point, as we are waiting for our enterolab results still, and we did work through them with lots of medical and counseling help.

A book that helped me, not with triggers, but just in thinking through the behaviors, is "The Explosive Child." The author says that if you do not think a consequence will prevent a behavior from happening again, you shouldn't use it. When behavior is truly out of control, you know whatever you do now to punish will not make any difference in the future. The idea is to figure out how to prevent the blowups.

Our family is now in a more peaceful state, and I hope that the same will be true for you, soon.

-Jane

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When I read your replies,it was quite a relief,that i am not alone.My son got diagnaosed recently,he is 12,and he had no symptoms except being edgy and difficult.My daughter was the first to come back positive in the bloodwork,then we checked him right away.

He does act up when he is accidentally gluttoned.And sometimes it does feel as I have failed him.I had a breakdown the other night,it took me over an hour to stop crying. :( Its hard and I have been pretending that this diagnosis is not life changing,but it is.I am going out of mind screening stuff.I wish he would participate in it too and learn for himself.I know that I am lucky that my kids actually were tested in the first place.I try to take one day at a time.The kids are eating better healthier food,Thank God!

The kids are not dairy free,[dairy is such an imp part of our diet,my kids love yoghurt and milk].I am giving them supplements,and doc has asked for followup in two months time.

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I've had my kids' behavior change after accidentally ingesting gluten too.

Another thing to consider vitamin B defiency. Look at the symptoms for this defiency.

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When my son is glutned or ingests dairy he becomes very hyperactive. On top of that he becomes very rough. Anyone who plays with him gets hurt. He isn't being mean and he isn't angry. But all of a sudden they can be playing and he will wrestle someone to the floor. I drives me crazy because other people don't understand what food can do to someone and I feel like they think I am making excuses. I don't excuse his bad behavior but I do understand it.

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    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
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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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