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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

Should My Son Go Gluten Free?
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Hello all,

I have celiac, so naturally I am concerned that my 19month old son might have it. At his 18month check-up the doctor noticed that his height to weight ratio has dropped. He is in the 50th% for height and about the 25th% for weight but I guess there is a curve for the ratio between the two and he dropped off it. So she thought it would be a good idea to test him for celiac since I have it. Well the test came back negative, but at his follow up appointment my son had lost a pound since the original appointment. He was sick for a good week and was barely eating anything. Also we went on a trip and he didn't eat well during that week either. So I attribute his weight loss to that and the fact that he runs around a lot more now. However the doctor thinks that going gluten free might help him gain weight. My son has no symptoms or signs of celiac and believe me I've been looking for them.

Do you all think it would benefit him to go gluten-free? My concern is that I would like to test him again in the future and the results will not be accurate if he's not eating gluten.

Thanks for reading and any advice will be greatly appreciated.

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I would go gluten-free, it certainly can't hurt. When he is older, you can always do a gluten challenge.

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I agree with the doctor that your son should go gluten free. If he gains weight, you have your answer. If he continues to lose weight, you will need to look for other causes.

What have you to lose? You are already gluten free. Your son doesn't need gluten to be healthy. So what if blood tests may not be accurate in the future. He may be someone who always tests negative, whether he eats gluten or not.

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First let me say that you are lucky to have such a proactive doctor! I have two sons both who have tested negative for celiacs, but both of us parents have it. They too have not been growing & gaining like they should so we have put our whole family on gluten free. My older son gets major anger/attitude along with stomach aches & constipation from gluten (and other food issues), and really tired - not your "typical" celiac symptoms. My younger son gets all whinny and emotional, leg aches, and really tired.

Every person has a different reaction to glutens so who knows what you would notice as your childs issues. If your doctor is suggesting it then I would go for it. It would be much easier to do a gluten challenge later when your child is older and can realize & communicate all of his symptoms.

Good luck!

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My son has already gained back the weight he lost without going gluten-free in less than a week. Other than that 1 pound he lost he has never lost weight before or had trouble gaining. He always has lots of energy, has one good nap a day and never seems tired. He's always very happy and in a good mood - unless I tell him no or take something away from him. Then he can throw a tantrum but they are very short lived. His poops look normal, no eczema, no mood swings...no symptoms period.

So I'm very hesitant to eliminate gluten from his diet. He really likes bread, cereal and all that stuff. Plus I would hate to deny him things like birthday cake, playing with play dough and many other things if there is no reason for it.

We go to see the pediatrician in a few weeks so I'm thinking I'll hold off for now until I talk to her.

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They make a soy based version of play doh called soyer dough. I replaced my youngest son's play doh with it. He is not gluten free, but his hands like to touch all sorts of things. It was not worth the cross contamination risk. I washed all of the toys and now we have fun with it together.

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One step that you can take is ask the ped. to test him for the genes associated with Celiac - HLA DQ2 and HLA DQ8. Over 95-98% of those with Celiac has one/both of the genes, so if he tests negative, then you know his risk for Celiac is dramatically lower than someone with the gene. Of course, having the gene does not mean he has Celiac, as 30-40% of the population has the gene. But, would be a good bit of information to you to have.

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I'm going to be the holdout on this one - you say he was sick and didn't eat (we've all been there - I lost 5% of my body weight one week I had the flu) and that he was in a stressful situation and didn't eat (we've also all been there). Then you note that other than those two episodes, he's done fine gaining weight, and now that those things are over, he's gained it back. If that's the case, I just can't see where the jump to celiac, or even gluten sensitivity makes enough sense. Yes, there's a family history, so yes there's a higher likelihood he'll develop it. It doesn't mean he has it, and he's tested negative.

Given family history, I would DEFINITELY keep a very close eye on potential symptoms (and not restrict your looking to GI symptoms). I would also encourage expanding his diet so he's not so dependent on wheat, in case he ever does need to go gluten free (not to mention a varied, natural, diet is healthier). But this doesn't scream, or even loudly speak, "gotta try the gluten-free diet" to me. There is just too obvious of an explanation for the weight loss in the situations you describe.

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Thank you all so much for your responses. I will keep monitoring my son and watch out for any strange behavior/symptoms. And I will also try to find alternatives to all the wheat based snacks he eats just in case he ever has to go gluten-free one day. He does eat a lot of wheat. When we see the pediatrician I will ask about the gene testing too.

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