Friend's Child Is Sickly - Celiac Symptoms

[lonewolf]

A casual friend (more like a friendly aquaintance) has an adorable little girl who has been having some health problems. She's extremely small (negative 5th percentile), has had anemia (cause unknown) and her hair has been falling out. She's clingy and barely talks. I asked if she had been tested for Celiac, since my friend said the doctor didn't know what was wrong. And she's part Finnish - they have the highest rate of Celiac in the world.

Another friend (her sister in law) came over and laughed and said, "Liz thinks EVERYONE is gluten intolerant." And then basically told her to not listen to me.

I'm not trying to butt in, but I hate to see this sweet little girl sick. Since most of you are parents of children who have Celiac, what do you think I should do? Just forget about it or mention it again? I don't want to be pushy, but I also don't want to keep information from her if it would help. Should I let it drop?

[CarlaB]

I would mention that you are probably more aware of gluten intolerance than the average person because you deal with it every day, so you can see why the other friend said you think everyone has it, BUT here's something you printed out with the symptoms and a couple websites so you can check it out yourself. Most docs won't think of it until someone is VERY ill. Even the NIH is trying to educate them better on celiac since most were taught it's rare, when in fact about 1% of the population has it.

That's about all you can do. Let her know you're there if she has more questions.

[FeedIndy]

I think if you simply say something like, "I know everyone thinks I'm obsessive about this, but your daughter truly shows a lot of the same signs I did and I feel I would be selfish if I didn't share my knowledge." Point her to some literature, reputable websites (like this one) or articles about the disease and hopefully she will see for herself. If she goes to her doctor armed with knowledge rather than paranoia, her daughter could get to a diagnosis faster.

[Nantzie]

I'd print some stuff out for her - the National Institutes of Health has a good page on it. - Open Original Shared Link It's also a good set of information for her to bring to the doctor.

I'm sure there are other pages geared more toward children, but I don't know them offhand.

I'd definitely mention it again. I might even say to your aquaintance that your rude friend doesn't seem to be aware that this is a real disease that is just as real and just as serious as diabetes or any other disease. Just because she's never heard of it doesn't mean it doesn't exist. (Hey, she started the rude.)

I'm not sure how long you were sick, but if it were me, I'd say that if someone I met in a park as a friend of a friend had told me about celiac, I wouldn't have been sick for 18 years (ages 17-35). So if I can do that for someone else, and save someone else years misery and illness, I'm going to.

I'd also say to your aquaintance that just because you've seen enough signs to make you think that her daughter should be tested for it doesn't mean she actually has it. It's absolutely something that should be ruled out though. Saying something like this makes her see you as someone reasonable rather than the hypochondriac-ish person that your other friend is painting you to be. If she's rude enough to say something like that in front of you, who knows what she's said to your aquaintance about it when you're not there.

Grrr.... Why is it that the hardest part of this whole celiac thing is the rude things that other people say? I swear!

Nancy

[Guest cassidy]

When my mother told me she thought I had it I was not very happy. I realize there are tons of symptoms but seeing them in writing really convinced me to get tested. Could you print out a symptom list or something about celiac and give it to her? I would try mentioning it once and then leave it up to the other parent. If the child does have celiac and you are the one that points them in the right direction, you could really change her life.

I am pretty sure that my very good friend has it. We go on business trips together and she gets sick after eating and has all the symptoms I used to. Her father is severely lactose intolerant but he still has stomach symptoms even when he stays away from lactose. She says she is too busy to go to the doctors and she doesn't want to be on my restrictive diet. I've done all I can but then I had to drop it.

It is much more common than people realize so it isn't strange that you would meet someone else who may have it. I don't think people realize how common and underdiagnosed it is.

[blueeyedmanda]

I would go with the above posters, show her some information in writing. Seeing things on paper really do open your eyes. It is true, since we live with it we do tend to pick up on it more. Explain that to her, I would also let her know how much you care about her daughter and you just want to make sure something doesn't get overlooked.

[girlfromclare]

I know what you mean. My husbands family all have symptoms of celiacs disease esp our nephew which really worries me.. but as we have only really discovered this whole thing, the family are still coming to terms with our decision to take our son off guten and dairy. They realise we are doing it for marks good and although we have tried to educate them it is hard getting them to realise that this isnt just a whim or a phase we are going through. At the moment my husband (whose bloods were negative for celiac but has all the symptoms) is being referred to a GI and hopefully that will bring a difinitive diagnosis... once that happens it will be easier to tell the entire family that they should be tested. I understand how hard it is to be in your position... watching people who you are pretty sure are ill and not being able to instruct them to get tested. all we can do is say it once and make our case and then leave it. I agree with the other posters.... get a list of the symptoms and maybe just hand it to her one day and say "just thought you might want to have a look at this as I remember you saying that your little girl had a lot of the symptoms that are on this " etc and see if it makes her realise that you know what your talking about and are dealing wiith it on a daily basis.

good luck x liz ireland

[Guest nini]

being the mom of a Celiac/gluten intolerant child, I can speak from experience... Even with MY positive dx of Celiac when she was almost 3, it took my mom saying to me "you know, she has a lot of the same symptoms YOU had as a child, you ought to have her tested for this as well"... I HAVE Celiac and it didn't even occur to me that my daughter could have it to. Now I'm much more aware and I do see potential Celiacs all around me.

I would go back to your accuantance with some printed out info on the symptoms of Celiac and just say that you are concerned and want to prevent someone else from having to go through years of being ill before anyone figures out what's wrong. Since Celiac is highly undiagnosed and missed easily, and WAY more common than previously thought, you have every right to suspect it, AND the other friend was just way rude. Although my husband has said the same thing about me too...

[zachsmom]

I have sympathy for you... I would say hey ... ( *disclaimer.. this is what I say and I use this rarley) I say you know... this one time I happen to know what I am talking about... Your child could have Celiac disease. I know what I am saying... And you could tell her that .. what ever about the clingy behavior.. anemia... ect.. At least rule celiac out... the lady may listen .. or not.. But at least you can walk away knowing that you tryed... and you tried to make a difference. as this kid gets older... she is going to ask her mom... if the mom suspected celiac.. and the mom is going to have to say.. well this one lady suggested it .. but I chose to ignore her... sorry... it took ten years to finally figure out what is wrong honey... because inthe future they are going to have better testing for this. But you did your best and just walk away... KArma It will come back to this woman and it will follow you ... ... You try to make a difference and help someone ... and

Karma has a way to find you.. When your down and scared... SOmeone turns on a light and helps you... This site ( yes I have said this tribute a hundread times... Kibbie emailed me and also many others and she sais HEY I am here for you... and its like that in your life... You try and you try to help people ... and when you need it ... it will be there for you.. But and I say this personally in my alone time.. just give it to god and walk away... there isnt any more that you can do. but thanks for trying to make a difference.. okay ..