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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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FreyaUSA

Seeing A Child With Symptoms

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I have a kind of dilemma and would love suggestions/advice. I spend a couple hours a week with my daughter's 1st grade class. There is a little girl in the class who looks so much like how my 10 year old son looked at that age but worse, I feel she could very well have celiacs. Her skin is translucent, her eyes slightly sunken with dark rings, she's very skinny/wiry looking, etc. I've known her mother since she was 2 (but through a friend, I can't say we're even well acquainted, just acquaintences.) Her mother and father seem like wonderful, funny, open people (so I'm not getting any bad vibes from them.) She is starting at another school at the start of January (her parents moved out of the school district, but they're within communiting range.)

What should I do? Should I do anything? Looking at the girl, you'd not think it surprising to find she was being mis-treated. I just don't believe that is so (or I'd go to the school and not to this board.) If someone came up to you and said "your child looks like she could have celiac disease," how would you react? If I don't say anything and the little girl gets seriously ill, I would feel horrible and guilty. Ugh! I'm so confused!

I would really appreciate both positive and negative feedback on this, just to get an idea. Hindsight tells me I would have appreciated the info, but would I have, really, at the time? I think so. Has anyone else done this? I know my sisters have been interested in hearing about gluten intolerance, but none of them feel it's important enough to actually test their kids (or themselves.) But, at least, I tried.

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there was a similar situation with a child on my daughter's softball team. All of the moms started to notice that this child was getting thinner and thinner (Her bones were jutting out). At first, everyone suspected anorexia (I didn't think so, she was a little young for that). Anyhow, when someone mentioned this to her mom, the mom at first was defensive and said she didn't think her daughter had lost any weight, she was just getting taller. Long story short, her daughter started to complain of fatigue and finally they had her checked and she was diabetic. The parents were devistated. They felt so guilty.

One other thought about your situation - this child may have some malady that her parents are aware of and may not appreciate the comment.

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Thank you, Bklyn, for your insights! I'd thought of the defensive reaction, but I didn't think of the other, that she might have something else and they're aware of it, idea. :huh: I wonder how I'd react if someone mentioned to me my children looked diabetic... <_< I guess in my case I would find it to be an opportunity to discuss celiac disease. But what if it the child were to have cancer or something? *sigh* I just don't know.

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I think there's room to approach her with the "I'd rather ask forgiveness than permission" slant on the "I'm worried, this thought crossed my mind, based on my experience, and I would feel guilty if I didn't let you know." It needn't be a long discussion with her, and relating it back to your son is something that probably would help, but only in moderation. But I don't have kids, so maybe a mom would react differently.

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If she's starting someplace else in January, I don't see that you are going to have much impact. Would you or I rush to the doctor if an acquaintance casually dropped --in the midst of the holiday rush and moving to a new school -- that they thought our child had a little-publicized and hard to diagnose illness?

I agree that she might already have something her parents know about and you might be the 100th person to suggest they have a possible diagnosis. Been there, heard that! (My son was dx by relative strangers with cancer, anorexia, diabetes, kidney failure.....) BUT, given your good intentions, why not mention all this to the friend you have in common, and ask them to pass the suggestion along? You know "You know her better, and their child looks so much like jr. did when he was sick, Ijust thought they might want to know "

Joanna

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I agree with Joanna.

It is so hard to give advice tactfully... especially when it is not solicited.

A mutual friend may know better what they are going through and know the right way to approach the issue.

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this post is from Azedazobollis--remember to always send your post to the forum via the reply button, not the report button at the top of the last post :D otay--here's her post:

LOL. Yes, I have already diagnosed most of all my children's aquaintances... lol. I have even "diagnosed" my own friends, extended family memebers and grocery check out workers. lol. I just keep it to myself. My husband thinks Im crazy. I know just what you feel. I dont have any advice as I just stick with my own thoughts to myself.

Azedazobollis

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Azedaz...that is so funny! I, actually, feel like that, too, much of the time. The only reason I feel like I need to do something about the little girl is she just looks so pitiful.

But, here's an example of "trying" with family...My mother's cousin is in the hospital right now. She went in a couple days ago (she's 76.) They thought she was having mini strokes (some three letter term they use now, but meaning what we used to call mini strokes.) But, all the tests have come back negative. She has pain in her right arm, her right leg, her stomach is distended, her brain has "low fluids," but no stroke damage. She doesn't eat many things because they just disagree with her. She feels like she's living in a fog. The doctors have no clue what is happening to her. At all. I'd spoken with her kids over Thanksgiving and several of them are pretty convinced they may have gluten problems. So, I suggested to my mother she suggest it to her cousin that she gets tested (while they're doing all the other tests at the hospital.) I was pretty convinced my mother would NOT suggest it. But, if she did, her cousin would disregard it. But, if she didn't, her doctors would consider it ridiculous and not do it. Well, my mother did suggest it, but at this point, I don't know what her cousin is going to do. I really stressed whether to suggest it to my mother, but decided, I really had to or I would feel horrible if they found it out after the fact (like with my father.) My mother confessed, she only suggested it because of exactly the same reason.

The interesting thing abou this is that my mother FINALLY confessed she is feeling so much healthier these days while living with me and not eating gluten. Her sinuses are perfect (no constant allergies or sinus congestion.) She's been suffering from burning mouth syndrome and this has stopped (except for last week when she "had to" have a bite of a roll added to her salad lunch.) She has so much energy...Hmm... ;)

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An interesting update on my mother's cousin. She mentioned that celiac disease is in the family and would like to be tested just to be certain she didn't have that to worry about. Her doctor at the hospital had never heard of it. How can people even hope of getting a correct diagnosis if the doctors have NEVER HEARD OF celiac disease?

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oops! I didn't mean to do that. lol. :huh:

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As a parent I would have to say it can be irritating if a total stranger walks up and tells you how to care for your child. Given the situation you have explained, I would bring it up to the mutal friend or teacher. Ask the friend to contact the other parents and ask if the child has some other medical condition, if so end the issue there. If no other medical condition, ask the friend to give the summary of your concerns about celiac disease to the childs parents with your contact number. If the parents want to ask you more questions it will get back to you. If not, you have said your peace and you have given them something to think about.

I tell everyone about my celiac disease and the common symptoms that get misdiagnosed etc. Some people just say, Oh I know someone at school like that, I should tell there parents etc. In the end I just leave it at "If they want to talk to me for more info or doctors names, you can give them my number".

Good luck with your dilema

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