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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.

Oue teenage daughter is having issues accepting newly diagnosed Celiacs . Help
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Our daughter is 14. She was diagnosed right before the holidays. As great as it was to finally find out why she's had all these health issue ( two years following a four month recovery from a concussion) it hasn't been easily accepted. She avoids bread because they just aren't like the old ones. She sneaks junk she knows is bad. She won't go on the website for support. I suggested talking to someone, nope. She actually had a therapist during and after her recovery from the concussion because she was suffering from depression. We realize now it might have been partially from the concession and partially from Celiacs. I think she really still feels if she heals it will all go away. How do I help her. It's been hard for me as well. I feel sad for her. Then angry when she's not taking care of her body and taking supliments to be healthy. When we go somewhere she doesn't want me to say anything. She hates feeling different. And we fight when she does eat foods then complains how bad she feels. 

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You might want to continue with a therapist.  Maybe even one that deals in chronic illness or eating disorders.

this will probably get better with time.  It may get better when she realizes there are others out there with this illness.

 

 

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What are her favorite foods? We can give good tasting gluten free equivalents.

For example:

Bagels - Canyon Bakehouse makes a fantastic tasting gluten free plain bagel

Cereal - Gorilla Munch cereal tastes great and reminds me of corn pops

Chocolate cake mix - Betty Crocker has a gluten free chocolate cake mix that tastes no different to me than regular. Make cupcakes, frost them and freeze them. Then she can have one whenever she likes.

If she eats granola bars Kind bar - almond and coconut tastes great

Hershey bar 1.55oz I believe is gluten free.

Pizza - if she likes frozen pizza Freschetta makes gluten free pizza

Cookies - Glutino and Kinnikinnik make good tasting gluten free cookies

Snacks - Lays original potato chips, Glutino pretzels, Tostitos scoops were all gluten free last I checked.

 

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 I experienced the same thing as your teenage daughter... or something very similar. I'm still trying to figure out the depression and anxiety, but it has gotten better since I've been off gluten. It is so hard to be different as a teenager, even as an adult! It might take a while but time will heal all. It also helps to take a trip to Costco, they have so many gluten-free foods that are yummy, and you don't have to look very hard for them.  Also, it's helped for me to have people around me recognize that having celiac disease kind of sucks. Instead of trying to say that  gluten doesn't taste all that good anyways, it helped to have people support me. There was a time when I was very angry though. I can say that in the year that I've been diagnosed, and gluten-free I feel so much better... and it's definitely worth it. 

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Welcome! 

My heart goes out to you!  I have a soon-to-be 16 year old.  She does not have celiac disease, but I can relate to your daughter wanting to fit in and not calling attention to herself.  My daughter is in marching band and there is a 16 year with celiac disease.  Luckily, I have been able to inform the parent boosters and the director about celiac disease.  We make sure this girl always has some gluten-free snacks available to her at events (football games).  She has also come to our home for gluten-free baking during the holidays.  The other kids know she must be gluten free and are pretty supportive (band kids are a tight-knit group).  Every high school kid needs a group!  

Look for a local celiac group.  Consider a gluten-free camp.  (I wanna go!)  just think how much fun it would be to not have to worry about what you eat!  KarenG lists a few locations in one of her postings.    There is one in Northern CA (I am Southern) and I am seriously thinking of asking the group for a family gluten-free weekend camp.  It sounds so appealing!   

A therapist might be a good idea too.  

Has anyone else in your family been tested?  Maybe consider going gluten-free for the entire household so at least she will not feel different at home (get gluten fixes outside of the house).  Keep plenty of her gluten-free treats on hand.  I would not worry about supplements unless your doctor has tested for deficiencies and advised her to take them.  Encourage healthy food choices by modeling.  Eventually, she will improve.  Lots of setbacks, but you just move forward.  

Make sure she always has safe food on hand (purse, backpack, locker).  That will prevent poor food choices and risk-taking.  

You as a mother are doing your best!  Continue to keep supporting her.  And....let me tell you that by 16, you just might start hearing, "Thanks, Mom" instead of all that eye-rolling!  It is amazing how much maturing takes place.  

 

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On 2/11/2017 at 11:35 AM, cyclinglady said:

Welcome! 

My heart goes out to you!  I have a soon-to-be 16 year old.  She does not have celiac disease, but I can relate to your daughter wanting to fit in and not calling attention to herself.  My daughter is in marching band and there is a 16 year with celiac disease.  Luckily, I have been able to inform the parent boosters and the director about celiac disease.  We make sure this girl always has some gluten-free snacks available to her at events (football games).  She has also come to our home for gluten-free baking during the holidays.  The other kids know she must be gluten free and are pretty supportive (band kids are a tight-knit group).  Every high school kid needs a group!  

Look for a local celiac group.  Consider a gluten-free camp.  (I wanna go!)  just think how much fun it would be to not have to worry about what you eat!  KarenG lists a few locations in one of her postings.    There is one in Northern CA (I am Southern) and I am seriously thinking of asking the group for a family gluten-free weekend camp.  It sounds so appealing!   

A therapist might be a good idea too.  

Has anyone else in your family been tested?  Maybe consider going gluten-free for the entire household so at least she will not feel different at home (get gluten fixes outside of the house).  Keep plenty of her gluten-free treats on hand.  I would not worry about supplements unless your doctor has tested for deficiencies and advised her to take them.  Encourage healthy food choices by modeling.  Eventually, she will improve.  Lots of setbacks, but you just move forward.  

Make sure she always has safe food on hand (purse, backpack, locker).  That will prevent poor food choices and risk-taking.  

You as a mother are doing your best!  Continue to keep supporting her.  And....let me tell you that by 16, you just might start hearing, "Thanks, Mom" instead of all that eye-rolling!  It is amazing how much maturing takes place.  

 

" i was amazed how much my father learned between the time I was 14 and 21..."  Mark Twain

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We went through this with DD, it's a grieving process.  My DD went through all the stages denial, bargaining etc.  It took over a year before we were finally at acceptance.  She still doesn't like being different but she's ok with it.  Let her know her feelings are normal but make it clear she needs to stay gluten-free for her health.  It helped my DD to focus on eating naturally gluten-free foods, including salads, meat, fruit, but also treats that are already gluten-free.  Most chips and many candy brands are gluten-free just by chance as are some commercial breakfast cereals, Fruity Pebbles, Vanilla Chex,even Lucky Charms.  When friends are over we offer foods that everyone likes and  happen to be gluten-free...homemade nachos, tacos, top your own baked potato for meals and popcorn, fruit etc for snacks.

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whenever i am glutened, i am cranky and mean.  try not to take it too personally, mom. 

i can say this from a mom's point of view, having had to deal with my 19 yo son when he got diagnosed with type 1 diabetes - when he is low, he is a crab and a half.  of course, he is least likely to listen to advice when he is feeling like that.  it was awful to have to be patient with my growling, nasty offspring but eventually he realized that i wasn't lying to him and he actually felt so much better when he took care of himself.  he is 30, now, and eats carefully and gets plenty of exercise (so, take heart, eventually she'll figure it out for herself!) 

what you want her to understand is that she can break the cycle of gluten making her miserable.  give her the power (because, honestly, she's the only one who can control EVERYTHING she eats - you can supervise all you want but it only takes that one cookie when you're not looking <_< )  i like the idea of making your home gluten-free, but i don't know if it's from a common sense stance or a more personal one (ie:  gluten is poison for me) haha, but eventually she'll get hungry and find a favorite gluten-free food(s) because she won't have a choice to eat gluten.  does that make sense?  lolz - good luck - raised 4 myself and grandson is a teenager.  i still waste my breath telling him he needs to take a jacket............... :rolleyes:

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My 10 yr old daughter was just diagnosed a few weeks ago. For a couple days after she was happy to have answers, but when she didn't immediately feel better, she lost hope again. She is depressed and lethargic. She will only eat a few things and not enough to give her the energy she needs so she seems to always be hangry. I've tried everything I know to tempt her to eat, but her reply is "I'll eat that when I'm feeling better." The problem I see is that I think she feels lousy because she's starving (quite literally). I'm desperate to help her-this is torture to watch! My son was diagnosed at 3 with Type 1. I'm beginning to think this diagnosis is harder...

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Can you get her to drink Ensure high protein? I mix the vanilla one with my favorite chocolate drink so it tastes the way I like.

What foods does she currently eat?

 

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13 hours ago, midwayliz said:

My 10 yr old daughter was just diagnosed a few weeks ago. For a couple days after she was happy to have answers, but when she didn't immediately feel better, she lost hope again. She is depressed and lethargic. She will only eat a few things and not enough to give her the energy she needs so she seems to always be hangry. I've tried everything I know to tempt her to eat, but her reply is "I'll eat that when I'm feeling better." The problem I see is that I think she feels lousy because she's starving (quite literally). I'm desperate to help her-this is torture to watch! My son was diagnosed at 3 with Type 1. I'm beginning to think this diagnosis is harder...

A celiac diagnosis is hard to absorb even for adults.  She is old enough to understand and she now knows that she is different (that's so hard when you just want to be like everyone else).  There is a grieving period that is normal.   Be patient.  If things do not improve, get her some help.  It might be better to hear it from another trusted adult than from Mom. 

You are doing everything right.  I know you are loving her and being supportive.  Stay strong and do take some time for yourself, even if it is heading to the bookstore for a hour or so or taking a walk.  

Within a few months, there should be some improvement.  Be sure she gets a follow-up test three months after her diagnosis and then another three months later.  Learn more:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Hugs!  

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Thank you for the good advice! My husband told me last night that this is surely her way of grieving. I need to give her time.  I so appreciate your help. 

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21 hours ago, midwayliz said:

My 10 yr old daughter was just diagnosed a few weeks ago. For a couple days after she was happy to have answers, but when she didn't immediately feel better, she lost hope again. She is depressed and lethargic. She will only eat a few things and not enough to give her the energy she needs so she seems to always be hangry. I've tried everything I know to tempt her to eat, but her reply is "I'll eat that when I'm feeling better." The problem I see is that I think she feels lousy because she's starving (quite literally). I'm desperate to help her-this is torture to watch! My son was diagnosed at 3 with Type 1. I'm beginning to think this diagnosis is harder...

If she is overly depressed about it let her know there is a gluten-free version of just about every food out there and it is more like changing brands. I have a list of it, for now she needs to focus on simple whole foods and healing in a few months she can try a few of the gluten-free versions of her old foods. BTW might try making her some simple food foods for now. 1-3 ingredients like veggies/fruit and almond butter (new jar no crumbs) for a good snack platter almonds are high in protein and good fats to help her out with calorie intake. You can even make a reeses knock off by mixing warm nut butter with equal amounts powdered sugar or sugar free version like Swerve confectioners sugar use it for a dip/spread or use it in baking >.> I made a giant 9" almond butter cup once. Anyway here is that link you can look at all the options healthy and not so healthy all the different brands and see the world is full of gluten free options for just about everything. https://www.celiac.com/gluten-free/topic/117090-gluten-free-food-alternatives-list/

 

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Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.  

Hopefully, your GI talked about the fact that this AI issue is genetic.  

Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.  

 http://www.cureceliacdisease.org/screening/

https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/

Edited by cyclinglady
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5 hours ago, midwayliz said:

Thank you for the good advice! My husband told me last night that this is surely her way of grieving. I need to give her time.   

I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?

 

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    • 1. Double checked your antibodies? 2. Those of us with celiac have issues with some nutrients for various reasons, being either we can not absorb enough of them from our foods due to damage to intestines or the new gluten-free foods you changed to are non fortified and do not contain the nutrients you which is especially true if you eat a bunch of processed gluten-free foods. A combination of both of these can lead to extreme fatigues. I found taking Magnesium, and B-Vtitamin supplementation helps (Liquid Health Stress & Energy along with Neurological support same company, Liquid version is easy to absorb and no pills). Look into KAL Nutritional Yeast also, I use it to make condiment cheese sauces, toppings, blend it with egg whites. it contains many nutrients we are lacking and is a great supplement/food to have in your diet. 3, Look into what cycling lady mentioned, this could also be a issues. 4. Had your blood sugar checked?
    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good  Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life.  All the best!    
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
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