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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.

Waiting On Celiac Panel Results
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20 posts in this topic

(Fair warning: this is going to be long and rambling!)

The wait sucks! Especially because I feel like the worst mother for feeding my child poison, basically, while we wait for results and possible scope. The panel was done June 28, and the ped said it would take at least a week. The 4th of July holiday was in there too though, so maybe that will postpone it some.

Anyway...

My daughter will be 2 next week. She's breastfed plus table food.

In the beginning she had normal breastmilk poops, but they didn't last long. They changed to a thicker more solid poop that actually snaked out of her, long before solids were introduced.

Her poop *stinks* (I realize it's not suppose to be roses, but.....) even when she was EBF, and still now; it smells like stinky mothballs or creosote. :/ My guess is that it's because it stays in there for so long. That brings me to the main cause for concern, her chronic constipation.

Her normal is once a week or so, but she went 4 weeks last summer. Yeah, it was awful! :( For the approximately 9 months previous, I had been trying to treat at home. At that point, I decided we obviously needed medical help! The ped prescribed an enema cleanse for a couple of days followed by miralax for the next 9-12 months. We did that as much as we could, but it didn't seem to help; partially because she has a low appetite and doesn't drink much (probably because her belly is always so full of poop) and partially because we couldn't ever get the dose right so she would have liquid diarrhea multiple times a day, so then her tummy and bottom and anus hurt from it going through so quickly!!

Last month I decided we needed medical help again. We saw a different ped this time (my husband is military and the previous ped is going to a different base) so I gave the whole story: •irritable (I'm currently describing her as being a colicky toddler)

•tummy always hurting

•bloating

•chronic constipation

•sores on her tongue (geographic tongue, maybe?? It almost looks like burn marks, and I think it hurts her because she always has her fingers/hand in her mouth, not like teething, but like she's soothing her tongue.)

•and I also tacked on these few "bumps" on her skin which he said looked like molluscum (I thought molluscum looked like warts though).

He listened and seemed to empathize. I brought up celiac/gluten issues and he said it seemed like a good idea to test, because even without the ironic constipation, she's small, "almost FTT", then add in the chronic constipation and we did the panel that day.

She has a 2 year checkup/constipation follow up in a few weeks and the ped will give us a GI referral then. He wanted to wait until we have the celiac panel results so that I can take them with us to the GI and have something to go on, whether she's celiac or not. I do realize she's small, but didn't think it was "almost FTT". I haven't seen her plotted on the chart, but I looked up my old notes, and in 7 months (Dec 2012-July 2013, ages 17 months to 23) she gained 1 pound; she hasn't quite tripled her birth weight (7 pounds 4 oz at birth and 21 pounds at 23 months).

For the short-term, the ped prescribed similar to what we did last year: enema and then stool softener (lactulose this time, to see if she'll take it better than the miralax). She is taking it better, but I can still feel hard stool in her belly, and her belly literally feels like an inflated balloon. :( I may do another enema soon.

I'm anxiously awaiting the celiac panel results. I want to get in to the GI ASAP. If the blood panel is negative, we will see what the GI says. If the GI doesn't think it's celiac and doesn't want a scope, we will be going gluten free to see if there's an intolerance and maybe that will help the issues.

I feel guilty saying and feeling this, but I kind of want it to be celiac. Then, I have an answer, and we go gluten free, and ideally she poops and is happier (and grows)! But then for obvious reasons I don't want it to be celiac, because you don't want something to be "wrong" with your child (yet obviously there is already something going on!!).

If you read this, thanks! Sorry it was so long!

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Hugs Mama! That is exactly how I've been feeling with all of this with my little guy. He's six and I just got the negative endoscopy results from the nurse the other day. I have to write down my list of a million questions because he did test positive in the blood work. We see the doctor on Friday. Hopefully I get some answers then.

But I hear you.....I mean, I don't want my kid to have a lifelong battle with any disease but I want to know what is going on and why. So then maybe we can at least attempt to fix it. And I swear if I have one more doctor tell me to give him miralax and omeprazole, I'm gonna scream!

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:( Poor thing. I had chronic "C" since babyhood too. Going gluten-free helped clear it up (thyroid problems slowed that down though). She has so many symptoms of celiac disease or non-celiac gluten intolerance (NCGS)... I hope she will be gluten-free inspite of what any tests show.

 

You could probably put her on a lighter gluten diet until the GI appointement and biopsy. All gluten is bad for those with gluten sensitivities, but lots of gluten is really bad. I imagine that a small handfull of Cheerios or half (or quarter) of a slice of bread would be more than enough for her tiny size. Less gluten is required before a biopsy because they are looking for damage done and not measuring levels of an autoimmune response in the blood. I believe a two week gluten challenge is all that is required for a biopsy versus the 8 or so weeks of gluten needed for blood tests.

 

It sounds like you will have to go gluten-free with her if you are going to continue bf'ing her (and good for you for doing 2 years - more is always better when it comes to bf'ing, IMO) since she was reacting when she was exclusively bf'ed. Have you been tested for celiac disease too? You might want to do that before going gluten-free so you will have accurate results.

 

Good luck. I wish you lots of fun summer distractions while you are waiting to hear the results.

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The nurse just told me that all the results were either normal or negative.

I'm actually feeling kind of down about it, because my baby still can't poop and that was going to be my "simple answer". :( I gave her an enema last night, and she hadn't pooped since her last one 4 days before that. Gotta wait until next week to get the referral for the ped GI, then make an appt. In the meantime we are miserable. :(

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Oh hugs! Poor thing. :( I would have taken my little guy gluten free to if the results had come back negative. We are currently on a 3.5 month strict gluten free diet as he was a weak positive in the blood work and a negative with the scope but there was some scalloping which can also be indicative of Celiac.

See what the GI says and hopefully they can get it all figured out. It is pretty common to have false negatives in such young children....so I would definitely press to see the GI. Hopefully they can get you in soon. Aggravating, I know.

There's been too many things going on around here lately to even take a breather and see if my little guy is feeling better since going gluten free but it hasn't even been a week yet. And he had one incredibly nasty reaction to some cats yesterday and that usually takes a couple days to get over. Probably even more at this point since it was a strong reaction (hives and swelling eyes...the whole 9 yards!) and he hasn't reacted that strongly to a cat in a couple years! :( Lots of Benadryl....though his sister did treat him to frozen yogurt since she felt bad (he was with her at a friend's house). So....a nice tasty guilt trip. ;)

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Yikes, mommy2krj, hope your guy is feeling better soon!!

I'm thinking I'll call back tomorrow and ask for the GI referral to go ahead be put in. The sooner I have the referral, the sooner I can make the appointment.

I don't know if I should try going gluten-free and see what happens, or if I should wait until we see the GI, in case they want to do more tests that she would need to be consuming gluten for.

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Yeah...he was allergy tested a couple years ago after having a major incident in which we were very lucky that someone else had some adult strength benadryl as we didn't even know he was allergic at that point. It was instant hives and wheezing. This reaction took a little longer but it's been so long since he's had a reaction like that and he doesn't react to our neighbor's cat at all that I was a little lax with it all. His allergies seemed to be doing so much better over the last 9 months or so. *sigh* What can ya do. Wondering if going gluten free has anything to do with it....who knows. (I blame it all on my husband, the allergies, I don't have allergies like that. ;) )

As far as the going gluten free....unfortunately I would wait until you see a GI doc. If they want to do a scope on her she's going to have to be eating gluten regularly still. I would make myself a nuisance and make them get you a referral right now to the GI doc...it's not like it takes any real work on their part! Ugh...that part frustrated me so much....even though I knew they were incredibly busy. Sure do wish they had a test that didn't require you to continue feeding something to your kid that could be making them sick....that's such a horrible feeling!

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Goodness! No pet cats or animal jobs for him!

Yeah, too late to call now today, but I'll call tomorrow afternoon after my morning meeting. I'm assuming it'll take a while to get an appt with GI, so I want to call ASAP! It is awful to think that it's possible that what I'm feeding her is causing her pain and constipation. She's a baby (2 on Friday), she should be able to poop on her own! :( And also not be so cranky and growing is also a good thing. ;)

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Goodness! No pet cats or animal jobs for him!

Yeah, too late to call now today, but I'll call tomorrow afternoon after my morning meeting. I'm assuming it'll take a while to get an appt with GI, so I want to call ASAP! It is awful to think that it's possible that what I'm feeding her is causing her pain and constipation. She's a baby (2 on Friday), she should be able to poop on her own! :( And also not be so cranky and growing is also a good thing. ;)

Yeah and he so wants a cat (which wouldn't happen anyway as his dad is allergic to them and so is his sister!) so he colored a picture of a cat at school and asked me to hang it on the wall where he can reach so he can pet his pet cat. We have a dog...but he hasn't had any problems with them, thankfully. Just cats and trees....and now gluten.

 

I really hope they can get you in soon. Good luck....and definitely be the squeaky wheel!

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Celiac testing is very unreliable in young children, our ped says under 5 you are very likely to get a negative result. When all the testing is over and done with it might be worth giving gluten free a trial. Chronic constipation was the main symptom for both my daughters, even miralax didn't completely fix it, the only thing that did was gluten free.

Gluten can have an impact on allergies. My eldest had an anaphylactic egg and milk allergy. Gluten free the disappeared. The only time my daughter ever has an issue with milk is if she has had gluten, then she'll get hives, thankfully no anaphylaxis. Our immunologist said when she accidentally gets gluten her body goes crazy and does what it knows best - hives from milk. When on gluten she also used to get hives with any fever, not anymore.

Good luck

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Ped GI appt for July 30. Not too far away.

I'm feeling really stressed out though, because she has decided she won't take the miralax or the lactulose at all. I hate having to give an enema every 4 days for her to poop at all. She's gotten to where she doesn't go unless I give her an enema. :'(

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We used to mix my 2 yr olds miralax in water without telling her we just gave her the water, she never knew when she did or didn't have it. You can mix it in anything just don't tell her her or let her see! As she is really backed up. We've put it in yogurt, soup, juice. When you see your GI make sure to ask about something to use besides ene,as, the bowel nerves start to rely on the signals from the Emma rather than the body after extended use, and then they forget completely how to work.

You could try lansoil it's just like jello. Talk to the doc or a pharmacist. That was our first course of action before miralax and before we knew about celiac disease, but beware things can come out as they go in!

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That's exactly what I'm worried about with using enemas! :(

The problem with miralax is that you have to drink a lot of fluid with it, and she doesn't drink or eat much because she is always "full". Or at least, she doesn't eat/drink a lot predictably.

I've never heard of lansoil. What is that? Is it prescription?

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I have the results in hand.

TTG IgG 1 ref range (11-26)

TTG IgA <1

Endomysial IgA negative

Gliadin IgA 1 ref range (0-20)

IgA 29

Gliadin IgG 2 ref range (0-20)

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I don't see a ref range on the IgA, and it seems low....

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Yeah, there isn't a ref range provided on the paper for the IgA.

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Ped GI was just as unhelpful. Says she "senses that it's just stool withholding" and need to have her on enemas and stool softeners to get her over the anxiety and then she'll get better. She ran a CBC, thyroid, kidney and liver function, and checked vit d levels. No further testing. We go back in a month.

An enema a day for 3 days in a row, plus 1/2 cap of miralax in 4 oz of fluid, drank in 20 minutes, twice a day. After the 3 days, continue the miralax. She wants her pooping daily. If she doesn't, then increase the miralax. If that doesn't help, or she won't take more miralax, then an enema daily! :o

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I was recently diagnosed with celiac after my doctor misread my lab results. I was tested 4 years ago when my daughter was first diagnosed and my doctor incorrectly interpreted the lab results as negative. My IGA was very, very low. I had a followup lab 4 years at a checkup that showed something but the doctor wasn't sure what it meant.  I went to a celiac doctor at Beth Israel celiac center who called the lab because she had given me non-standard tests. It turned out that I am IGA deficient and that negates the other negative results. He said a percentage of people with celiac are IGA deficient. They did another test and I think the test was called Anti-DGP and that was positive and then the biopsy was positive. The specialists advice is that many doctors and labs misinterpret results. It's good to work with someone who understands the different types of tests for celiac and what to look for. I think a lot of labs aren't all that sure either and that surprised me too. If the ped GI is not helpful then get someone else. We went to 3 ped GI's before there was someone nice that we could work with.

 

I really don't believe in "stool withholding". If the system isn't working somethings going wrong. 

 

I also have a friend who has celiac and her daughter has non-celiac gluten intolerance. 

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Thank you seezee! It's so good to have support, and have someone tell you that you're right to so what you're doing, even if it's just over the Internet. ;) My husband is deployed right now, so while he supports me, it's not the same as when he is home.

My daughter has a rash, which started as just a few dots. The ped thought it was molluscum (it doesn't look like pics online of molluscum), and the ped GI asked if she had a rash, I said yes, she didnt go any further with it, didnt even look at it. Now the rash is much worse, so I called her PCM yesterday. They put in a referral to see derm and also a second opinion with a different ped GI.

I'm thinking about having myself tested for celiac, as I've noticed my bowel habits don't seem right, and I feel "sick" after I eat, tired a lot, plus some migraines.

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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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