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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? - 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 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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My daughter was diagnosed with celiac disease 5 months ago after she had fallen off the growth chart. She is 7 years old. Anyone happen to know when we may start seeing celiac growth spurt? I'm worried because in the past 5 months she's grown 1/2 an inch and has only gained 1/2 lb. We are following up with her endocrinologist this week and I want to be prepared before we go in to see her. Thanks! 

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Not sure what you mean by "celiac growth spurt."

How was the celiac diagnosis arrived at?  Based only on symptoms? Genetic testing? Endoscopy?

Are you making sure that your daughter is strictly following a gluten free diet? Gluten is hidden in so many manufactured food products you really have to be scrupulous with checking ingredient labels and also be very careful when eating out. It's not just avoiding bread and pasta. You have to eliminate even minor amounts of gluten from the celiac's diet. It can be very daunting at first and there is a real education curve involved. In time, you almost get to know instinctively what things to be suspicious about as possibly/probably containing gluten and what things are probably safe out there in the wild.

Has anyone else in you or your spouse's families been diagnosed with Celiac disease?

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Trents has given you some good advice and asked some good questions.  At three months, your doctor should have ordered another celiac blood panel to see if her antibodies are declining.  Then again at six months and one year based on celiac research centers like this one:

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

Your endo should refer your daughter to a PED GI,  if possible.  You should consider a dietician who is celiac-savvy as well.  They can help your daughter make good food choices.  I am sure you are doing a great job, but the responsibility will soon be on her shoulders because she is not with you all the time.  You both might not need this, but it might be helpful.  Or join a celiac group (they have summer camps! 😊)

Kids (I am not a doctor) have different growth spurts.  She might need more time for healing.  It can take months in a child to recover and that is dependent on a truly gluten free diet.  Accidental exposures can trigger antibodies that can increase for  weeks or months.  My own kid was in the 5% club on weight and 50% in height during infancy, toddler and young child ages.    As long as she was growing a little, I was satisfied as was her PED.  She hit the 25% bracket when she was closer to 10, if I recall.  She does not have celiac disease!  I want to let you know that some families are little.  

Please look to her diet.  Check out our Newbie 101 section pinned under the  "coping" section for tips.  Do not eat out and avoid processed foods until you see an improvement in her height and weight and have lab tests showing a downward trend.  The take those risks of a gluten exposure.  

Take care!  Stay informed and do like you just did -- ask for help.  Having  a daughter who has an autoimmune disease can be daunting.  But she will be fine and so will you!  You just have to learn to be a little more prepared in terms of food.  And here is the biggie....be patient.  This is the hardest lesson I have had to learn.   You can do this!  

Oh....had the rest of the family been tested?  They can have celiac disease even without displaying any symptoms! (All first-degree).   This is a genetic disorder.  

Another question.  Does she have diabetes or thyroiditis?  Is that why she is under an ENDO's care?  

Edited by cyclinglady

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3 hours ago, Ccllcc46 said:

My daughter was diagnosed with celiac disease 5 months ago after she had fallen off the growth chart. She is 7 years old. Anyone happen to know when we may start seeing celiac growth spurt? I'm worried because in the past 5 months she's grown 1/2 an inch and has only gained 1/2 lb. We are following up with her endocrinologist this week and I want to be prepared before we go in to see her. Thanks! 

Both of my children (6 & 9) and myself were diagnosed around 6 months ago. With my husband on board we are a 100% gluten free household. After a summer vacation with another family I found that there are so many potential cross contaminations that can possibly occur when there is a shared kitchen. I feel so lucky in that we don't have to worry at home but understand there is a lot of work for the parent preparing food for a celiac child. If you haven't yet researched about ways to keep the celiac disease kitchen/food separate I would definitely get that in order.

 The kids were just retested and their TTG numbers after 6 months were cut in 1/2 for my 9yo who was most effected by celiac disease, and down by 75% for my 6yo. With this confirmation I feel that we're on the right track with our diet along with overall feeling 100% better. With that being said, my 9yo has always been on the low end of the growth charts, I too was hoping that he would really take off once we changed our diets. I feel that he has only begun to grow in the last month or so. He's up 1-1/2" and about 1 Lb. His GI doc was a not concerned at this point but reminded him to eat his meals and encouraged me to give him high calorie, high protein to his diet. 

Best of luck!

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Your daughter is only 7 years old.    I believe with a strict gluten-free diet, and some time, she will grow.

My daughter was diagnosed at age 10.   When she was younger, she was always tall for her age.   She was in the 90% percentile as a toddler.   When she was finally diagnosed at age 10, we noticed that she did not grow at all for a little over a year, and she was at 25% percentile, and shorter than all her girl friends.   (She used to be one of the taller kids in the class)

She is 14 years old now, still growing, and she is catching up with her friends, (no longer the shortest).   She is 5' 3'' right now.   She does not have her period yet, so we hope she will grow another few inches.   If she can be 5' 6", that would be a very good height for a girl.

I think your daughter will be fine.  With a strict gluten-free diet, of course.

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