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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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candygirl69

Help Please? 13 Year Old Son Sneaking Wheat!

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Not sure if gluten does this to your son, but for me it caused severe cystic acne. I had it for almost 25 years. Two rounds of Accutane couldn't make it go away permanently. Couldn't handle most antibiotics. Allergic to some topicals. Anyway, after being off gluten for 2 months, and my cystic acne was gone! Did a 4-day gluten challenge, it came back in FULL force. Disappeared again once those sores healed. Dermatologist was amazed.

So avoiding acne may be a good motivator! Especially if he gets break outs after eating gluten.

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I think he needs to understand what is going on inside of HIS body. Teenager-hood tends to bring out the "I'm invincible" attitude, especially when there is an opportunity to prove something. I would suggest (if feasible) you try showing him pictures of the damage to the villi in his small intestine... assuming he had a biopsy. I think things need to become more real for him — this is not a disease he can dismiss as pretend. Gluten does real damage to his body which will only get worse. (That's what would have worked with me — not trying to scare him here!)

Thirteen is a tricky age. You did a great job figuring out what was plaguing his body, now he needs to embrace the changes that will lead him to good health. He is in control of his own body now — sadly, we all only get one. Learning about all of this now will give him all the more wisdom later on, too. :)

Poor guy, it's so tough. :( Keep at it, you're doing great!

~Laura

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My kids really enjoy being able to go buy stuff like the other kids do. We have worked it a couple of different ways, depending on the circumstances. You may want to see if you can work with the canteen to ensure that he has options there so that he can go get extra food if he wants. We also tend to pack lots and lots of different snacks with my kids so that they always have something to eat should they get extra hungry in the day. I cannot imagine how much food a teenage boy could go through!

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This is a quote from Max Lucado about chidren to parents....

"You've been given a book with no title--read it!

A CompactDisc with no cover--listen to it!

An island with no owner-- explore it!

Resist the urge to label before you study.

Attend carefully to the unique childhood of your child."

Open up the communication to see what is going on. What is the underlaying reason? Tell him again how much you love him. How special he is, just the way that he is.

I also suggest the Lizlovely gluten free cookies. (I order from the website. They are not cheap!) What a nice concept they are sold under!!? Two HUGE cookies per package. One for you and one to share. Not even a gluten eater can resist! I would hang on your every word for a cookie, I swear! Makes a conversation like a special bonding experience! (I keep them on hand when My friends need a venting time and they end up spilling their guts and feeling pampered.)

I great way for him to fit in and make more friends by sharing gluten free with his peers.

Good luck!

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My 11 year old daughter just diagnosed with Celiac ( blood only ) has told her friends and teachers everything, from blood work to doctor appts. to getting the biopsy done next week. She's very open with everyone. I have her looking up gluten-free recipes online, grocery shopping together and even comparing prices of the "old" food to the gluten-free food. I even discussed with her the problems she may encounter if she eats gluten. She is well aware of the consequences and complications. She's a social butterfly and is always going places and to have a "tummyache" and "headache" would be devastating to her social career...ha ha! So, she better stick to her diet or else no play time!

She does pack her lunch and I have packed enough gluten-free cookies, and candies to share with her friends at the lunch table. I was amazed to find out that most of her friends tried and even liked the food. They have all learned about this and it's important to teach her friends what's happening. Her true friends will support her!

Now, in a few years she may rebel, but for now I'm pretty rough on her about eating what she supposed to eat.

Good Luck!

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I Just thought of an idea! Make the best gluten-free pizza's and serve with the best gluten-free cookies and have all his friends over for a party. Educate his friends and make a list of all the gluten-free foods that he can have so they are aware. My 15 year old son would think this is ridiculous, but I guess it's the parent in me. Sounds fun!

Good Luck!

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I Just thought of an idea! Make the best gluten-free pizza's and serve with the best gluten-free cookies and have all his friends over for a party. Educate his friends and make a list of all the gluten-free foods that he can have so they are aware. My 15 year old son would think this is ridiculous, but I guess it's the parent in me. Sounds fun!

Good Luck!

My daughter's friends have for the most part been very reluctant to eat any gluten free foods. They just think it is weird. They only tried the gluten-free brownies at her birthday party after we had an accident with the real cake. The cake was still edible. The frosting just got a little messed up. One girl took a small bite of a brownie then asked me how I took the gluten out. Heh.

But overall they don't even want to eat any food at our house. Even if it's a regular food like a Popsicle. They are just fearful of our food.

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    • When you're looking for answers the negative endoscopy may seem like bad news in a funny way, it did for me when the doctor told me, but really as CL said it's good.  Keep working with your doctors.  From what you've said before gluten could still be the problem.  Now you've eliminated celiac you can try removing it from your diet, but it's important that you do it safely. You don't want to cause a problem while trying to fix one. Most people get a lot of B vitamins in particular from gluten foods. So if you make a change to your diet do it with your mom, ideally involve your doctor or a dietician and keep a diary of your symptoms too, sometimes called a food journal. You may still have found your answer, don't panic and don't lose heart. Best of luck Matt 
    • BoliviaB, DH rash can occur in Celiac's who reindtroduce wheat/gluten after a break from gluten. However I want to go/see that the parasite route has also been exhausted. The fever's (for most Celiac's anyway) are not typically but low grade inflammation is. I had annual bronchitis issues and ear aches that went away after stopping gluten. You did not say if your were a native Bolivian or not but if you are you  probably know about Chagas disease carried by the Kissing Bug. A blood test will confirm that the Chagas parasite's were killed with your AB's round. Though many AB's rounds can be as long as 2 months . . . not just two weeks for complete control. I wonder if you have Chagas (possibly) and it is causing you colon problems.  GI problems can be a sign of advanced Chagas complications. If you are having your blood drawn again it should be (re)checked. In the US (since it is not endemic) as it is in Bolivia people typically find out if they have it (Chagas) by giving blood. Chagas is considered a Neglected Tropical Disease (NTD) in the US but in Bolivia it should be ruled out as a possible cause of your fever(s) and GI problems. https://www.cdc.gov/parasites/chagas/disease.html quoting "a dilated esophagus or colon, leading to difficulties with eating or passing stool" can be a sign of chagas. if you hadn't mentioned parasites in your regimen I might not of mentioned it.  And in the UK if they didn't know your country of origin or your home country they might not of think to ask about it since it is a Neglected Tropical Disease and therefore had no reason to suspect Chagas to test your blood for it. I was only aware of it because it has begun to show up in Texas and CNN run an article about it a couple of years ago. http://www.cnn.com/2015/11/24/health/kissing-bugs-chagas-disease/index.html  If you have an outdoor dog --- dog's can also contract Chagase disease from the bite of the Kissing Bug much like in the US dog's can get heart worm from a mosquito bite. The CDC (the US health agency) says most people are assymptomatic but GI problems can be a severe sign of undiagnosed Chagas in about 30% of the population. quoting again "In people who have suppressed immune systems (for example, due to AIDS or chemotherapy), Chagas disease can reactivate with parasites found in the circulating blood. This occurrence can potentially cause severe disease." . . (NCGS and/or undiagnosed Celiac Disease (my words) could certaintly complicate someone's response to the Chagas parasite). This might be higher in Bolivia. . . and probably is since Chagas is endemic to Bolivia. The good news a blood test can help you find out if undidangosed Celiac or undiagnosed Chagas is causing your problems or if it is a complicated mix of the two. **** this is not medical advice but it explains your fevers' better than Celiac (usuallY) but the rash defiantly could be a DH reaction to gluten. I hope this is helpful. 2 Timothy 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God, ETA: Here is the FAQ link from the CDC on Blood Screening for Chagas disease in the US.  https://www.cdc.gov/parasites/chagas/gen_info/screening.html Again I hope this helpful.    
    • Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note:  a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription). So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.  Rye Barley Spelt Wheat Oats  Buckwheat Sorghum Millet Amaranth Quinoa Corn Rice Potato Hemp Teff Soy Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk) Chocolate Yeast Coffee (instant, latte, espresso, imported) Sesame Tapioca (a.k.a. cassava or yucca) Eggs   Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.  After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it. Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.    P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back. 
    • I am 33 and just diagnosed with celiac in July 2017. I am gluten free but still suffering from costocondritis and stomach acid issues. I am also dealing with some neurological things like pins and needles in my left shoulder blade that come and go. No deficiancies right now that we know of othwr than vitamin D which I have a prescription for. My symptoms were not bothersome until right after my first child and then everything fell apart. 
    • That is good news!  No celiac disease!   I would follow your doctor’s advice.  Consider adding in more veggies and fruit into your diet.  You can trial a gluten-free diet now that testing is over.  That might help.   Did they rule anything else out?  I would encourage you to obtain all your lab results and medical records.  It is a very good thing to maintain!  
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