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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.

Are There Any Other Celiacs That Are Overweight?
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96 posts in this topic

Wow! I am so glad to hear about others that are in my boat.. I am 5'8" and currently weigh 285 pounds! :( I just started the gluten-free diet a couple of weeks ago... I am still trying figuring out what I can and can't eat... I am just hope that now that I am on gluten-free that I might lose some weight... I just have to be careful, I seem to be now eating everything in sight...I don't know why but i seem to be hungry all the time!

I am going to the grocery store today and I am going to get some fruits and veggies for me to snack on instead of chips (I have found Lays Stax...and they are addictive!)

I am also thinking of cutting out a lot of sweets... I think I am going to try to do only what I can cook for now... especially for dinner... like meat and veggies and a small amount of starch...either rice or mashed potatoes..but do like a little bit of the starch and then most of the meal the meat and veggies... like 1/2 meat, 1/2 veggies and a little pasta or rice or mashed potatoes....

any advice?

Thanks!!

--Maya

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Cut out the junk food, sugar and processed foods, even if they are gluten-free. Eat foods with protiens and natural fats plus green vegetables. These foods digest more slowly and you won't feel as hungry. Natural, whole foods are the best. It will take awhile for your body to adjust to eating less. It is really surprising how little food your body really needs. I used to eat constantly but now only eat a tiny fraction of what I used to eat and never feel hungry. I weighed well over 250lbs. I probably weighed closer to 260 or 265 but 250 was the last time I weighed myself when I was overweight. I now weigh 160.

All the dieting in the world is useless if you do not EXERCISE! I used to get exhausted just walking ten feet. Now I can walk for hours and a five mile bike ride is just a warm-up for me. I started lifting weights about four months ago and now do it every other day.

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HI everyone,

Just a quick note to tell you I have dropped 7 pounds in the past 15 days. I gave up gluten-free processed foods (bread, grains, beans) and have been eating a PALEO (caveman) diet. I feel so much better and I quit reacting to whatever was in the processed foods. I am not itching anymore and my stomach has calmed down.

I also bought a diet and exercise tracking program for my PALM, which is absolutely fabulous ! I use it to write down all foods and drinks every day. It keeps track of calories, carbs, protein, fat, saturated fat, and fiber. I also enter exercise and activities to track calories burned.

all the best - have a good week everyone -

kathleen

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I too am one of the overweight celiacs, my sister was one of the ones who got so very thin. When going gluten free, she gained and I lost. I lost 60# in the beginning and felt so much better. Gluten free flours are so much heavier and more calories. I eat lots of rice and I guess I need to cut back on that too. I have gained some of the weight back and I wont let that happen to me again. My sweetie tells me I am not fat, that I am fluffy, but I dont want to be fluffy. The most important thing is I am not sick all the time anymore. I have some bad days, but they are good compared to 4 years ago. Deb

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I too am one of the overweight celiacs, my sister was one of the ones who got so very thin. When going gluten free, she gained and I lost. I lost 60# in the beginning and felt so much better. Gluten free flours are so much heavier and more calories. I eat lots of rice and I guess I need to cut back on that too. I have gained some of the weight back and I wont let that happen to me again. My sweetie tells me I am not fat, that I am fluffy, but I dont want to be fluffy. The most important thing is I am not sick all the time anymore. I have some bad days, but they are good compared to 4 years ago. Deb

I lost 30 lbs before I was diagnosed with Celiac, and could actually comfortably fit into some of my clothes. In the past 6 months I have gained back the 30 pounds (plus 10). I know that a lot of my problem is depression.

I have a real problem with portion control. It would be nice to be able to freeze leftovers for extra meals, but I will eat a 4 serving meal by myself. I have found a lot of gluten free snacks. Instead of treating myself to one a few times a week, I will treat myself to many on a daily basis. I have managed to stick to a gluten-free diet, but I feed myself to make myself feel better.

I don't know how I am going to make it throug my first gluten-free Christmas season. People bring treats into the office almost on a daily basis. I am going to feel so deprived.

I think it is time to seek out some professional help. :(

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I dont know about professional help hun--you just need to start concentrating on the good things about knowing that you are gluten intolerant. I feel it is so much better to know what is wrong with me then to be going through life thinking its all in my head. When people at work bring things in, I just smile and say, no thanks! Patients bring us donuts all the time, I just tell the others which one to eat for me. You have to quit thinking that food is all there is to life, cause it isnt. You cant concentrate on what has been taken away from you, you must concentrate on what was given back to you. I have a life now--I can make plans--I dont live in the bathroom anymore! You just have to set your mind to the fact that we cant go back. Deb

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Karen don't give up, you will get through this. :D

so many of us understand....

sonja

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Hi, I have just been told that i am a celiac but I'm not convinced as i have been overweight all my life and I do not have the skin issue i have been reading about associated with celiac. While i have battled stomach issues all my life but not to the extent that i have been reading about. The Dr. did a biopsy and said i had it...but i am reluctant to make such a huge change in my eating habits until i am sure...is it possible to have this even though i am overweight and dont get violently sick everytime i eat gluten???

please advise

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Hi, I have just been told that i am a celiac but I'm not convinced as i have been overweight all my life and I do not have the skin issue i have been reading about associated with celiac. While i have battled stomach issues all my life but not to the extent that i have been reading about. The Dr. did a biopsy and said i had it...but i am reluctant to make such a huge change in my eating habits until i am sure...is it possible to have this even though i am overweight and dont get violently sick everytime i eat gluten???

please advise

If your biopsy was positive, you have it. Sorry.

I have it and I had no symptoms at all.

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Yes, it can be overwhelming at first to learn how to ship and prepare gluten-free meals. A couple of things that make it easier:

find a nutritionist who knows about Celiac Disease. This will be the best money you have ever spent (and maybe it's free, if covered by your health insurance). He/she can help you plan out meal ideas, appropriate foods, etc. I am not sure where you live, but I can recommend someone in NY City if you are close to here.

find a support group in your area. there are many such groups across the country. Meeting with other celiac disease patients can be very helpful.

I, too, have been slightly overweight for most of my adult life (10-20 pounds). After going on the gluten-free diet, i dropped about 16 pounds. I have gained back 4 of those now, but am hoping to lose another 10-15 pounds total. I am part of an EMAIL weight-loss group for celiacs. If you want more info, let me know.

I know what it's like to be overwhelmed by all the things in your life. Just remember to make and take the time for yourself first - especially while you are pregnant. This is very important! Even if it means ordering groceries online and having them delivered or hiring someone to do your housecelaning, DO IT ! (Our local super store delivers for a $6.00 charge. It's a pretty good deal, considering the amount of time I would normally spend in the store. I haven't used their service yet, but am hitting that point now. I did hire housekeepers, however, and that has been the SMARTEST thing I have ever done!)

all the best,

Kathleen

Kathleen.. I would also like to have th information about the EMAIL weight-loss group for celiacs.. MtLady
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I have to agree, positive biopsy, means you are positively celiac!

Come here for support, this place is GREAT!

Monica

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Hi, I have just been told that i am a celiac but I'm not convinced as i have been overweight all my life and I do not have the skin issue i have been reading about associated with celiac. While i have battled stomach issues all my life but not to the extent that i have been reading about. The Dr. did a biopsy and said i had it...but i am reluctant to make such a huge change in my eating habits until i am sure...is it possible to have this even though i am overweight and dont get violently sick everytime i eat gluten???

please advise

I didn't realize I had symptoms until I stopped eating gluten. So many "minor" things went away that I realized I had actually been feeling horrible for several years but things had changed so slowly that I had just adapted to everything. I had issues with dermagraphism (kinda like contact hives) and my boss suggested I might be allergic to wheat. Since I'd also recently had other allergic type reactions (throat swelling, face swelling) I went to an allergist and asked about food allergies. He insisted that if I had a problem with any food I would know it. I started doing some internet research on wheat allergies, found celiac.com and decided that I didn't really fit the profile. But then I started reading these postings. So many people have posted about so many things that were similar to experiences I had been having that I stopped eating gluten.

Within 3 days I knew that I would never willingly eat gluten again. I also am overweight and only have minor digestive issues, but the changes in my mood, my ability to think, headaches... all returned to how I used to feel 5 years ago. I consider the changes in my allergy levels, pain levels, dermagraphism, tummy problems etc. all just bonus.

And since I haven't said it yet, I want to thank everyone that posts here. Especially people that rant. For some reason those rants seem to have a lot of unexpected information and evoke a lot of "hey, me too"s.

Thank you

Jeanna

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Hi, I have just been told that i am a celiac but I'm not convinced as i have been overweight all my life and I do not have the skin issue i have been reading about associated with celiac. While i have battled stomach issues all my life but not to the extent that i have been reading about. The Dr. did a biopsy and said i had it...but i am reluctant to make such a huge change in my eating habits until i am sure...is it possible to have this even though i am overweight and dont get violently sick everytime i eat gluten???

please advise

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I went gluten free last December. My appetite normalized. Then about 17 weeks ago, I reduced my intake to start a weight loss diet. I couldn't get weight off before no matter how little I ate, and I was always starved. Now, I've lost 34 lbs, and it has been relatively easy. I'm not uncomfortably hungry.

I eat a lot of vegetables, salads, choose low fat meats such as fish or chicken, also include some fresh fruits. I have yogurt, popcorn, and even corn chips on occasion. I splurge on peppermints on occasion or coconut macaroons.

I suspected a gluten intolerance for a long time, but just couldn't make myself try the gluten free diet. I didn't want to accept it. Now, I wish I had done it years ago. I wouldn't have lost my health over it and have so far to go to try to get it back.

I read that there was an e-mail group for celiacs trying to lose weight. Anyone know what it is. I'd love to have that kind of support.

Since you tested positive, there really isn't any way of getting around it. However, there is hope since they may be coming up with a pill that will help us eventually. Personally, I'll never go back to eating wheat, even if this pill does come out. Well, o.k., I'll take it once every few months so I could have pizza. I miss pizza. <_<

Dx with fibromyalgia 10 years ago (Probably really due to the gluten, most of my pain is gone now)

Dx Hypothyroid abpit 4 years ago

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Hi. I'm new to the forum and have been reading many postings about folks suffering with diarrhea and having difficulty gaining weight. My case is actually the opposite. I have spent many years trying to maintain my weight. I have had terrible constipation that I've been hospitalized for, this was usually followed by weeks of diarrhea. :( I have recently been diagnosed with Celiacs and am slowly trying to learn about the disease and eat gluten free. :blink: Are there any of you out there who are overweight and constipated instead of underweight w/diarrhea?

I am very concerned about how to change my lifestyle to fit in gluten-free eating. It seems like a full time job. I live in a rural area, commute 1 hour each way to work at a fast paced law firm, eat lunch on the run, go to graduate school at night, am a newlywed of 6 months and am 3 months pregnant. :blink: How do you all find the time to shop for these special foods online or at health food stores, make bread from scratch, eat gluten-free lunches, dinners, etc.??? Obviously I want to be completely gluten-free as soon as possibly to help grown a healthy, happy baby in my belly. Help....

Jules

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I went gluten free last December. My appetite normalized. Then about 17 weeks ago, I reduced my intake to start a weight loss diet. I couldn't get weight off before no matter how little I ate, and I was always starved. Now, I've lost 34 lbs, and it has been relatively easy. I'm not uncomfortably hungry.

Congrats!! :-)

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I've been suffering from constant pain, bloating, feet swelling, heartburn, constipation/diarrea, high blood sugar, high triglycerides, anemia, headaches, dizzyness, black outs, vomiting, constant nausea, swollen tongue, itchy rashes and hives, liver and spleen pain and swelling. I've had so many tests done where they said nothing was wrong with me ~ and all docs have tried to put me on antidepressants and a weight loss plan. All weight loss plans have failed ~ I even gain when I'm not really eating at all.

I was JUST diagnosed last week with Celiacs with a "leaky gut" (?) ... anyway I'm 40 and while I'm sad I can't have cake and cookies anymore... I'm actually thrilled to know what is actually going on! From my research, all these symptoms could disappear if I avoid gluten ~ wow!! It seems so easy. Then I start reading labels, and this diet might be tougher than I thought. BUT, I'm going to do it because I'm so curious what feeling good feels like :)

I'm also happy to find this thread and others who are like me ~ I'm loving reading all this information and support!!

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Welcome, hope that you're on your way to feeling great soon! I use sparkpeople for weight loss and LOVE it! My ID is nahum1_7 on there. I've lost almost 20 pounds since going gluten free June 2, though I also had to give up dairy and soy too. But as long as I don't get glutaminated I 'm feeling so much better! ((((hugs))))) have a great blessed day!

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I have the same problem. I have always been overweight regardless of how much I eat. wheat makes me very constipated. I almost never get diarea. May be once every 5 or 6 years if that.

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I'm overweight and suffer from constipation as well. I also have rheumatoid arthritis and I'm stunned to find out there is such a strong link between celiac and RA! I'm so glad to have "refound" this group after being away from the boards for so long.

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I was diagnosed May 21st. The only way I have lost weight was that I went on the paleo diet 2.5 weeks ago. I lost 5 lbs., but cheated this weekend because I went to a wedding and had some wine. I have been overweight since I was 12 with a few exceptions. Weight Watchers does work. I chose Paleo beacause I would have to eliminate dairy and soy, neither of which I have a problem with. This week I'm having trouble with motivation.

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    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • 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: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". 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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