My Neice Needs A Voice.

[AuntDeb]

Hello All!!

I gotta say, I am so impressed by all of you handling Celiac Disease so well. It's truly inspirational. Until a few months ago, I had no idea what Celiac Disease was. I'm posting a few questions because I'm really at my wits end with my sister. Her daughter is 1 1/2 years old. She weighs just 17 pounds. When she was diagnosed with Celiacs just 5 months ago, she weighed 15 pounds. The poor thing just isn't getting better and I'm so worried about her. I just saw her last night and her stomach was so swollen her belly button was protruding. I came home from my visit determined to figure out what my sister is doing wrong with her. Intially, when my sister started implementing the gluten-free diet, her stomach swelling went down slightly and the baby would let me hold her and play with her. She seems in pain again and it is just breaking my heart. I can't help but worry that irreversible damage is being done to her brain development and overall physical development.

What set me off to do this research is what I was seeing my sister give her daughter to eat. I saw her give her potato chips and french fries and hot dogs and strawberry icecream. I wondered if she was misreading the label and giving her foods with gluten in it. To top it off, she let her daughter eat cake crumbs from the ground. I tried to bring this to her attention but she didn't seem to care. But really, what do I know about what she can eat?

As parents and grandparents of children with Celiac Disease, is there something I can say that will help this situation and show her just how serious this is? If nothing changes, will the state step in and say something should the baby continue to not gain weight? What are my options here? My sister is one of the messiest, laziest people I know and I just can't see her changing without some sort of serious wakeup call. Has anyone else ever witnessed something like this and just felt helpless?

I have a feeling if I come right out and say what I want to say, I won't be in the children's lives anymore and that would just kill me.

Thanks in Advance!!!

[ravenwoodglass]

"My sister is one of the messiest, laziest people I know "

Ya know people used to think that about me. I wasn't lazy I was just so exhausted from fighting the neuro effects of celiac that I had energy for just about nothing. Has your sister been tested for celiac? Celiac is genetic and all first degree relatives should be tested.

Has she visited here? If not bringing her to this site might be one of the most helpful things that you could do.

[happygirl]

I saw her give her potato chips and french fries and hot dogs and strawberry icecream.

It mainly depends on two things - the ingredients in each product, and how they were prepared. Even if the products were safe, if they were prepared in/around bread proudcts, they may not be.

To top it off, she let her daughter eat cake crumbs from the ground. I tried to bring this to her attention but she didn't seem to care. But really, what do I know about what she can eat?

You know enough to know that cake crumbs, even on the floor, are not safe for someone with Celiac.

Its hard to have a mixed household AND be messy AND stay gluten free.

[ang1e0251]

It sounds like your niece could definately be having serious CC issues. I don't have any good advice for you on dealing with your sister. Families are very tough and if they don't want to, they won't. But I will add that your niece may be having a problem with dairy. Many of us do. That can also give the symptoms you described.

When I felt my niece wasn't getting the best care, I just tried to volunteer to keep her with us as much as possible. When I saw her I would ask her if she had eaten and make sure she ate good food whenever I saw her. Truthfully, when my brother saw how easy his life was when she was with me, we kept her a lot. I felt, at the time, it was the best I could do for her. Had I estranged myself from him, she would have been on her own a lot. Not good.

I hope this helps you. I will keep you and yours in my thoughts.

[rinne]

It sounds like your niece could definately be having serious CC issues. I don't have any good advice for you on dealing with your sister. Families are very tough and if they don't want to, they won't. But I will add that your niece may be having a problem with dairy. Many of us do. That can also give the symptoms you described.

When I felt my niece wasn't getting the best care, I just tried to volunteer to keep her with us as much as possible. When I saw her I would ask her if she had eaten and make sure she ate good food whenever I saw her. Truthfully, when my brother saw how easy his life was when she was with me, we kept her a lot. I felt, at the time, it was the best I could do for her. Had I estranged myself from him, she would have been on her own a lot. Not good.

I hope this helps you. I will keep you and yours in my thoughts.

Excellent advice and how fortunate your niece is to have you.

Deb, is this a younger sister? I ask because I have a younger sister who, no matter how diplomatic I am, will not listen to me. My nephews and niece have gluten issues, as does my sister, but she lives in denial. Recently my nephews, now young adults, have come to me to ask about nutrition. I kept my mouth shut many, many times because I knew if I confronted her directly I wouldn't see them at all. I am known as the aunt with antique food and they giggle when they recount my giving them organic food for birthday presents.

[AuntDeb]

Excellent advice and how fortunate your niece is to have you.

Deb, is this a younger sister? I ask because I have a younger sister who, no matter how diplomatic I am, will not listen to me. My nephews and niece have gluten issues, as does my sister, but she lives in denial. Recently my nephews, now young adults, have come to me to ask about nutrition. I kept my mouth shut many, many times because I knew if I confronted her directly I wouldn't see them at all. I am known as the aunt with antique food and they giggle when they recount my giving them organic food for birthday presents.

Yes. This is my younger sister. She is so stubborn with me. I am always treading the line between trying to sound helpful and being downright nagging.

When I said she was the messiest, laziest person I know...it was a statement based on her lifelong habits. She has always been the type to have a nasty house (or bedroom back when we were kids) and live on the computer or in front of the television. I've been over to her house before and the food from three hours ago is still sitting out and spilled all over the table. There are random wet spots everywhere from who knows what. It's truly not a great environment for children and especially not one for children with celiac disease. I just know she is getting ahold of stuff she shouldn't. She has two older siblings that are 4 and 3 who run wild most of the day.

My sister has tested positive for the gene, but she doesn't have the disease. Does that make sense to you all? Sometimes I wonder how much of what she says is true. I went ahead and got tested and I don't have the gene.

Just reading all your posts about cross contamination makes me feel so bad about this situation. I can see now that she isn't being careful about what the baby is coming into contact with. I really do wish I could take this baby more and give her a better diet. I can give her a clean house to play in but we aren't gluten free so I don't know what is safe. I'm willing to learn though. The problem is that I have two kiddos of my own that take up so much of my time.

So....it depends on the ingredients of the food? Can you give me a simple idea of what ingredients to stay away from?

Thanks again!!

[rinne]

There are silent Celiacs, people who apparently have no digestive symptoms but are still being damaged by gluten. It can affect our whole body, even our ability to think clearly. perhaps this has something to do with her messiness.

My sister is messy too!

The simplest thing for you to do would be to serve her unprocessed foods: fruit, vegies, eggs, meat and fish, keeping in mind that it needs to be prepared with gluten free utensils. You could also find out from some of the moms here what kinds of treats their children tolerate and keep a box around for when she comes to visit.

Have the other children been tested?

[RiceGuy]

rinne took the words right out of my mouth. So many people get a false negative on the tests, I'd have serious doubts until getting multiple opinions, and all the latest tests. Furthermore, I read recently, that some additional genes have been associated with Celiac, which could change things for many people who've already received negative test results.

I don't know what the law specifically state, but the term "endangering the welfare of a child" is beginning to look applicable. Wet carpeting is so easily infested with bacteria. Same with food left out for extended periods of time.

What would happen, if you offered to keep your niece at your house for a week? Perhaps if your sister sees improvement, it'll begin to sink in. Thing is, one week may not be enough, but it's probably worth a shot, if you can figure out how to approach her about it. Maybe suggest that she looks like her kids are running her ragged, and could use a break? You obviously know her better than any of us.

I also agree with the suggestion to show your sister this site. Maybe start off with a link to something less confrontational. A recipe perhaps. Here's a link to the recipe section: https://www.celiac.com/categories/Gluten%252dFree-Recipes/

[Takala]

Do you have a grocery or a health food store nearby, that you could visit, and then when you visit her, bring her a bag of gluten free goodies ? (you could run your potential shopping list past us first after reconnoitering to see what is available). I know that processed foods that are gluten free are expensive and perhaps she is also not able or willing to buy enough kiddie type treats that all the kids could be eating safe, non gluteny foods.

There are certain main stream brands and flavors of each item you mentioned that are gluten free- chips, fries, ice creams, yogurts, etc. I am somewhat of a scratch cook and don't eat the stuff, but that doesn't mean that I wouldn't stop anyone else from eating it if it's safe and they can tolerate it.

There are also many types of pretzels, cookies and crackers that are specifically packaged and labeled as gluten free.

You could also buy her a bag of Pamela's Baking mix, and/or some of the pre-packaged Gluten Free baking mixes for cakes, brownies, or cookies, and brand new cookie tin or cake pan to be used for gluten free baking.

No, this doesn't solve the whole problem but it might be a start to getting her more aware of what she needs to be doing.

[ravenwoodglass]

You have been getting some great advice from all.

One thing you can do if it looks like she won't let you or anyone else help or educate her and the child is suffering is to contact the child's doctor. While the doctor can not discuss her case with you directly that doesn't mean that you can't let him know your concerns. It will also be obvious to the doctor that she needs help getting the baby compliant with the diet when he sees how little ground she has gained on the next visit. They might be able to send a visiting nurse to the house to help educate her who will also be able to assess the situation. He will also let her know that he is bound by law to contact CPS if he thinks the baby is in danger. Let him know that you are concerned that you will lose contact if you say to much to her but that she needs help with this rather complicated diet.

My son had celiac from infancy and when he only weighed in at 12 lbs at a year, he basically stopped growing at 6 months, I had a few helpful visits from the nurse and was warned that CPS might contact. They ended up deciding he was just a real small child unfortunately, I do so wish he had been diagnosed then. She has a chance to prevent some very real issues in this child by being compliant, I do hope she does.

[AuntDeb]

I appreciate everyone's help in this matter. It really took me reading these posts to understand just how complicated this disease is and how hard my sister is going to have to work to get control of the situation. I am going to give all of your suggestions a shot because really, I'm desperate. First things first is turning her onto this website. I only hope she doesn't read my post and figure out it is about her. I tried to not get too specific but she might think it was too big of a coincidence that every detail is similar to her situation.

I have been pushing her to make her house completely gluten free. She suffers from horrible ibs and uti on a regular basis. I'm actually doing a brochure on Celiac Disease for a class I'm in. I might use that to start the conversation over to "Look how much I've learned about Celiac Disease. There is so much to learn. Did you know this and this?" I'm not alone in this, I have another sister to help me get through about the baby. I think I'll go ahead and get her here as well.

Thanks again!!!

[CeliacMom2008]

Obviously we are only hearing one side of the story here, but your side breaks my heart. I agree with RiceGuy that the picture you've painted sounds like child endangerment. I believe it is in Dr. Peter Green's book that he sites an example of a child that was taken away from his parents because the state thought the parents were starving him to death. Actually the child had undiagnosed Celiac. Once they diagnosed him and began feeding him gluten free they realized the parents were not in fact unfit they just didn't know what was wrong with him (they had taken him to many doctors). The point of that long story is that yes, the state might step in if your niece become deathly ill. Unfortunately that's not the best for her! The other point is that continuing to feed her or allow her to accidently (cake crumbs) ingest gluten is no different than her being undiagnosed. The whole point of the diagnosis is to help her by limiting her to a very strict gluten free diet. It is certainly not easy and your sister (from what you've said) doesn't sound like the kind of parent who is going to work that hard. What about her dad? Is he in picture?

Although I'd like to have some sympathy for your sister, I think your niece is in need of someone willing to help her. And it would be great if you could take her, but with Celiac a few hours or a couple days isn't going to do anything for her if she goes right back to gluten once she gets home. Celiac causes an immune response. A little gluten each day is going to be just as bad for her as a piece of bread each day.

You know your relationship with your sister. You have seen what's going on. I think you need to do some serious thinking and praying and decide if you think your sister can change, decide if the situation is as bad as you made it sound (I'm not saying you were exaggerating, but my next piece is a pretty drastic measure, so you need to be sure), and finally decide if you need to take actions to help get her removed from her home either permanently or until your sister can take care of her. I know that is a HUGE thing to consider and that's why only you can make that decision. We aren't there to see it. To help put it in perspective for you...to a Celiac gluten is poison. So think of it as rat poison. Is your sister either intentionally or unintentionally (but allowing it by not taking care of the situation) giving your niece the equivalent of rat poison on a regular basis?

But if it's just a case of her not being able to understand the diet (it can be a lot to grasp) or not having the time to deal with it, maybe you could do the research for her, even provide safe meals for your niece, help clean, etc. It would be a lot of work for you, but if your sister is a good mom who just doesn't know how or have the time to be a Celiac mom you could be the angel she needs. And once you get it started maybe she'll be able to take over. It might be that she just can't get a grasp of what to do and needs someone loving to help her.

Your niece is lucky to have an aunt who loves her so much! Take care of her and let us know if we can help with information!!

[rinne]

I appreciate everyone's help in this matter. It really took me reading these posts to understand just how complicated this disease is and how hard my sister is going to have to work to get control of the situation. I am going to give all of your suggestions a shot because really, I'm desperate. First things first is turning her onto this website. I only hope she doesn't read my post and figure out it is about her. I tried to not get too specific but she might think it was too big of a coincidence that every detail is similar to her situation.

I have been pushing her to make her house completely gluten free. She suffers from horrible ibs and uti on a regular basis. I'm actually doing a brochure on Celiac Disease for a class I'm in. I might use that to start the conversation over to "Look how much I've learned about Celiac Disease. There is so much to learn. Did you know this and this?" I'm not alone in this, I have another sister to help me get through about the baby. I think I'll go ahead and get her here as well.

Thanks again!!!

If we let this thread drop now it will move to the back and she most likely will not see it but if you want me to edit my post to take anything out (messy sister) I am happy to do so.

You could edit your post if you wanted to.

I agree that connecting her with this site would be very positive.

[CeliacMom2008]

Rinne,

Could we delete the whole thing once AuntDeb has read it - like tomorrow or whenever she says so? Then she could just start new threads with questions and such. That way if her sister did come here and do a search on her past posts she wouldn't see it. Even if she edits it her sister might be irritated with her business being discussed. My post in particular would probably be taken very badly. I tried to word it such that I'm only thinking about the child and the situation as it was described, but if she does make the effort it would be nice if she felt like we'd welcome her. We should do whatever we can to help the baby.

AuntDeb - please keep us posted on how she does.

[psawyer]

Individual members can edit their own posts for 48 hours after making them, but can not delete them.

If there is a desire by the original poster to have the topic removed, let a moderator know and one of us can make the entire thread invisible, pending deletion by the board administrator.

[mommida]

What I would do in this situation....

Look out! Free advice hear that is going to cost you time and money!

Get some great gluten free products including books. Things like K-toos (Kinnicknick cookies like oreos), Tinkyada pasta, Gluten Free Pantry mixes for brownies and bread and some of the other gluten-free mainstream products like Fruity Pebbles, Cocoa Pebbles, M&M's (not Krispy), Skittles and such. This is improtant because it has a message that there are good things to eat.

For the books I reccomend Celiac Kids by Danna Korn. It has a theme of "deal with it don't dwell on it" very good with emotional factors of Celiac. For the cook book I suggest The gluten Free Kitchen by Roben Ryberg it doesn't rely on harder to find ingredients and recipes are simple. (Include xanthan gum or guar gum in your gift basket and potato starch.)

Schedule time to go through the kitchen. Empty every cupboard, wipe it clean, read labels of all the products, Put a huge read X on gluten stuff or a red sticker. Items that need further confirmation from the manufacturer can be put in a section. If the kitchen is going to be mixed - you've got to find the gluten free safe product zone.

This will be more than one days work, but getting help from your sister makes it that much easier.

[RiceGuy]

She suffers from horrible ibs and uti on a regular basis.

Yep, two classic symptoms! Sounds like she should also be on a gluten-free diet. Even if she didn't have Celiac at the time of testing, doesn't mean she hasn't developed it. And of course, the tests are notorious for false negatives. While I'm no doctor, I cannot believe gluten and/or other foods aren't giving her problems. Those symptoms you've mentioned are huge indicators of something, especially digestive issues. IBS is a symptom, not a disease in and of itself.

Neurological problems are very common with Celiac, and it is possible that she'd be an entirely different person on the gluten-free diet. Unfortunately though, it can be almost impossible to get such individuals to even listen. There have been many discussions on this board about gluten making people irritable, cranky, argumentative, lethargic, obsessive-compulsive, unreasonable, etc, etc.

[gfpaperdoll]

Obviously the mother has a gluten problem. IBS & UTIs are huge flags not counting that she knows she has at least one celiac gene. Plus add in fatigue (laziness) & obvious depression... plus having a child diagnosed celiac...

Deb if you can manage it you could go for more of an intervention to get them all off of gluten, dairy & soy. You might mention to the mom that she is at high risk of cancer & other auto immune illnesses. If the mom had testing & was negative that means nothing. The dietary trial is the real diagnosis.

[Silliest of Yaks]

My understanding is you'll never develop the autoimmune element of celiac disease without an initial gluten intolerance (whether it creates noticeable digestive symptoms or not). If mom does have gluten issues contributing to her IBS, and she has the gene, she's only setting herself up for trouble later.

As for the mess issue, as a grown-up ADD kid, whose childhood room was an ongoing disaster zone (and whose apartment gets bad enough that I go through phases of not having people over), I feel like I have to stick up for your sister by pointing out not all of us are programmed to be tidy, and for some it can be a disastrous challenge. She might be doing the best she can on her own, but your support can make a difference. Maybe you can volunteer to help organize the kitchen, and set things up in such a way that a less-than-organized person is better able to maintain healthy conditions. It took an organizing overhaul on the part of my husband for us to be able to keep our kitchen a safe and gluten-free space (even when the rest of the apartment isn't pretty).

My final comment - YES, eating a few cake crumbs would trigger a disastrous response for a lot of us. Allowing a celiac kid to do that is just not safe or smart, and to allow it knowingly and repeatedly borders on negligence. But it could be a one-time mistake, the result of a lack of understanding of the consequences of glutening, denial on the part of mom, some combination... regardless, if it's a repeated occurrence, it does require intervention. But celiac disease and gluten intolerance are often paired with other food intolerances and digestive problems. It could be that the dairy in her ice cream is causing a continuation of problems, or she also has an associated disorder such as IBD (chron's/colitis). Continued digestive problems like bloating don't necessarily indicate that she is habitually getting glutened, and follow-through will be different depending on whether gluten is still in the picture. Just something to keep in mind.

I wish you and your family the best.