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Extended Family -- What If They Refuse To Adjust?


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29 replies to this topic

#1 cdford

 
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Posted 12 December 2004 - 02:41 PM

I can almost guarantee when my 13 yr old daughter has gotten into something while out with her friends. She bloats up, becomes irritable, wets the bed again, and can't breathe. Then comes the itching and a breakout. The really bad thing is that some extended family members don't even believe in celiac so when she is at their house they won't even attempt to accomodate her needs. Anybody else deal with that one? I can't exactly tell her she can't see her grandparents! She comes home after a few days there and we deal with the consequences for months.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

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#2 MySuicidalTurtle

 
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Posted 12 December 2004 - 03:13 PM

I do think you can tell her she can't see them. Both of you need to tell them they HAVE to be accomidating. Maybe you need to have a docotor sit down with your daughter and her grandparents to show the damage cheating can cause. Her health is very important and if they don't care to help her be healthy then something has to change. Maybe bring her own food or stay for only short periods of time where she won't need to eat?
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#3 Guest_jhmom_*

 
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Posted 12 December 2004 - 03:37 PM

I agree, you are the parent and if the grandparents can't meet her needs then I wouldn't let her go, plain and simple. Your daughter needs to know the seriousness of this diease and what COULD happen if she continued to eat gluten, that's what I had to do with my 8 year old daughter after she cheated a few times (after being dx) at school and now she KNOWS what she can and cannot have and she sticks to the diet 100%!!
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#4 mela14

 
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Posted 12 December 2004 - 03:42 PM

Maybe you can prepare food in advance for her to take with her. also, you have to insist with your parents that they not give her things that her body can't handle. If they can't do this then you have to think about your daughter's well being and stop the visits. In time they will miss her and probably realize they have to change their ways!! I'm sure they will come around and do what is good for your daughter especially if they want to see her.
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#5 celiac3270

 
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Posted 12 December 2004 - 03:44 PM

I think Kristina (mysuicidalturtle) is absolutely right. You have no other choice. Basically, if they care about your daughter and if they want to have extended visits, they have to accomodate or at least, let you send food and not offer gluten.

I think the bigger problem, though, is that your daughter is in denial about it, herself. Ultimately, it doesn't matter how accomodating or unaccomodating people are if she's not going to take responsibility herself about the diet. Also, I'm not so sure that she doesn't believe that it's celiac--this would be more likely if she had no symptoms. She is probably unaccepting of the strict dietary changes that need to be made. I think that's the first and most important problem you need to deal with. If she accepts celiac, I think it'll be easier for others to.
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#6 tarnalberry

 
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Posted 12 December 2004 - 04:33 PM

I've got to agree with the thought that you are the parent, and since their house is unsafe, she doesn't go there. They can see her at your place, or somewhere else, but do what you have to do to keep your daughter safe and be confident in that.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#7 FreyaUSA

 
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Posted 12 December 2004 - 06:06 PM

I think celiac3270 has a valid point (who, I believe, is also a teenager?) Your daughter is 13 years old and, unless her grandparents are purposefully misleading her (putting flour in something and saying it's gluten-free for example,) she needs to take responsibility for what she puts into her body. I would make it easy for her, of course, always packing safe foods for her to eat when she goes to visit (breakfast, lunch and snack items) and even pre-screen what dinners will be. But no one is forcing her to eat what her friends are eating when she's with them or what she knows she shouldn't at her grandparents. She is making a conscious decision to eat them herself knowing how she's going to react. This is what I tell my three kids when they do this. They need to accept that this is for life and if they decide to eat something with gluten they just have to deal with the miserable consequences. I help in whatever way I can, of course, but I'm not sympathetic. (However, I'm VERY sympathetic when it's accidental. ;) )

Maybe it would be worthwhile to get her onto the teenager area of this forum? Let her see that she's not the only one out there with this. I don't think it would hurt anyway.

Good luck!
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#8 cdford

 
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Posted 12 December 2004 - 09:52 PM

Thanks for the input, guys. I was just really frustrated when I wrote the post earlier. You all have said what I knew but did not want to deal with. And, yes, my daughter is in denial. You would think she would catch on with my status being as bad as it is. Maybe this last time she finally has caught on. At least she is commenting about how frustrating and disgusting it is to have itchy scabby places all over her legs and face. She even lost some weight between attacks this last time. I don't know. I sure hope she gets it together. I am one frustrated Mom.
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Donna
South Georgia
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...

After almost 10 years, I am doing soooo much better!

#9 Born2run2

 
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Posted 13 December 2004 - 07:19 AM

I agree most of the responsibility has to be on your daughters shoulders. Is there a support group in your area? I know I had to make the decision myself that I was going to stay gluten free. Of course there is a difference between being an adult and being a child. I am a grandparent so it pains me to say this, but if your folks don't cooperate, they should only have supervised visits. You have to protect your child, also you need to educate her so she makes proper choices when you cannot be with her. I am looking for some videos on the subject but so far have come up empty. There is plenty of literature out there though. Just thought I'd add my 2 cents worth. Judy :( :ph34r: :D :o
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#10 kabowman

 
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Posted 13 December 2004 - 11:36 AM

My son, 13, will be 14 in just over a month has problems, not with gluten (not yet) but with cinnamon and all processed meats. He tested w/blood test as not Celiac.

He has gotten to the point where he completely avoids ALL cinnamon but he comes home from school after eating pepperoni pizza and is sick for days. He knows, it is his choice. He is chosing to eat, he has not been getting sick enough, often enough to make that decision and it is his decision. We don't use processed meats at home and we have almost eliminated cinnamon from our baked goods.

However, if they don't believe and are lying and hiding gluten, that is altogether different. I would not allow my child to go, end of story.

Another angle, my son's dad believes the processed meats bother him and sees other problems but does not see the cinnamon so my son just avoids those foods there too...

Good luck...Kate
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-Kate
gluten-free since July 2004

Other Intolerances:
Strawberries and Banannas (2007)
Nitrates (April 2006)
Yeast (which includes all vinegar so no condiments) (Oct. 2004)
Peanuts (Nov. 2004)
Soy (Oct. 2004)
Almonds (Sept. 2004)
Corn (Sept. 2004)
Lactose/Casein (1999)

#11 celiac3270

 
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Posted 13 December 2004 - 01:32 PM

I think celiac3270 has a valid point (who, I believe, is also a teenager?)

Yep.....I'm turning fourteen in January.

Like I said before, it would probably help your daughter to accept it if everyone around her accepted it, too. In terms of convincing disbelieving relatives, I would suggest, if you haven't already, printing a few serious, but comprehendable articles about celiac and the risk factors. After all, they might care more if they knew that your daughter is at risk for cancers, ulcers, etc. if she doesn't start a strictly gluten-free diet. Additionally, if you have some sort of letter or paper or something in which the doctor officially diagnoses your daughter, it would be good to include a copy of this so that they can better accept that your daughter has celiac. There are many articles on the site here about celiac, risk factors, symptoms, etc. that might help. Oh, you can also print posts on the board, too, if you find one that's particularly helpful--

I'm not really sure what should be done to convince your daughter--this isn't really a matter of convincing, I guess....she probably knows that she has it, but doesn't want to.....admit it and face the consequences.

To offer a teenager's perspective--the diet eliminates all spontaneity, the limited selection of food can get really boring, and usually the things that you want the most are the worst things you can eat (bagels, pizza, etc.). It's very inconvenient to read labels and then, usually, to need to call companies. Finally, I find that I get self-conscious when asked about celiac and I feel alienated, strange, and different if I'm eating something that looks and tastes different that I brought and everyone else is eating the food that I can't eat and crave. Additionally, while other adults would often try to be sensitive to another about food, kids/teens can be cruel and might make fun of a gluten-free food or the health issue in general--though I'm fortunate enough to be among a fairly nice group of kids at school, I had a different experience at camp.

That's all for now...keep us posted :)

-celiac3270
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#12 Carriefaith

 
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Posted 15 December 2004 - 01:22 PM

celiac3270 already mentioned this, but I think that it is very important. You should get your daughter and her grandparents to read up on the complications of celiac disease if left untreated or if you don't follow the diet.

Here are some websites:
http://allergies.abo...iaidceliac6.htm
http://digestive.nid.../pubs/celiac/#6
http://health.allref...plications.html

This may help. Your daughter and her grandparents will hopefully have a different attitude after reading up on this.
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#13 tyki

 
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Posted 16 December 2004 - 10:18 AM

Just a couple of short comments.

Like the others have said, if the grandparents won't adjust and cooperate with the gluten free requirements then you as the parent need to look out for your teens welfare. Perhaps this will give you a slightly different perspective:

If the grandparents had handguns laying around on the coffee tables, and a candy dish full of ammunition, would you let her spend the weekend there?

How about if they encouraged her to drink beer and wine while she was there?

How about if you knew they were involved with drugs?

What if they were child abusers?

As a parent your responsibility is to watch out for the welfare of your children. The above examples are extreme, but, if you let your child go to stay with the grandparents in the above examples, you would be risking the child's welfare. By not respecting your child's gluten intolerance and adjusting their meals during her visits, the grandparents are putting her health at risk, just as surely as if they were filling her juice glass with wine or rum, or handing her a loaded weapon. Don't put your teen in a situation that you KNOW puts them at risk.

Now, the other comment is directed toward your second post. Where you said "You would think she would catch on" and "I sure hope she gets it together." If your daughter is in denial, hoping and waiting for her to "catch on" give her room to stay in denial. Be direct, make the connection for her. Tell her "The itchy scabs on your face and legs are from eating gluten." Don't wait for her to make the connection, it took too many of us too many years to find out what was causing our problems. Celiac is a difficult diagnosis to make. You know what the problem is, lay it out for her, over and over again if that's what it takes. Please, don't sit back and hope she gets it together. She needs you, with the experience and the knowledge to help teach her. This is not something you can let her learn from her peers, or figure out on her own.

I don't mean to come down hard on you, but you do your daughter a disservice if you aren't standing up for her. Protecting her from those who don't accept the diagnosis and helping her to accept the diagnosis and make those connection, that is your responsibility as a parent.

My grandson is not showing any signs of celiac, yet when I figured out that gluten was causing my problems and got my doctor to agree that I had celiac, I wrote a letter for my daughter to give to the pediatrician. I don't want my daughter to have to struggle to figure out why something is bothering her son, and if having the info about celiac helps the doctors, then I have helped my grandson. The family history of celiac disease is in his medical records, and his pediatrician has decided that with the family history, there are certain immunizations my grandson will not be given, because they are wheat based.

I am recently self-diagnosed with an anecdotal agreement from the family doctor. Luckily my side of the family dealt with this with my grandmother, and I also have an uncle with celiac, so acceptance isn't a problem there. However, I will see how things go with my in-laws over the holidays. We've tried to explain it over the phone, but I really don't think it has sunk in to my mother-in-law yet. So, I am heading there for a week long visit, with lots of my own food in tow, at least we are driving and not flying, so taking stuff with me won't be as much of a problem.

Being open and up front is the best way to get the message through. Your posts here show you are concerned for your daughter. I may have been off-base with how I read your posts, but I really felt I needed to reinforce the responsibility to watch out for your child's well-being and helping her face her health issues.
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#14 Sharon C.

 
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Posted 20 December 2004 - 07:01 PM

Hi celiac3270-

I have to say that I am so very impressed with how you carry yourself on this message board. My son is 8 years old, just diagnosed in October, and I hope he turns out to be a lot like you! :)
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#15 debmidge

 
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Posted 21 December 2004 - 04:13 AM

Note to celiac3270: Before you read my post, read the one before mine. Thanks.

Hi All

I hate responding to posts about the raising of children as I do not have any of my own....but I've raised a few in my time.

I just want to say that people don't grow up (mature) automatically overnight. The teenager doesn't go from say 16 to 17 and wake up the morning of their 17th birthday and say "I'm an adult now, so every decision I make will from now on be a mature one." There's a lot of "slip-sliding" until the twenties (as I am sure we all can recall).

We all know the teenager who is 18 but acts much younger. The 14 year old can for all intents and purposes understand a concept, but isn't mature enough to put it into action or to sustain the action (i.e., keeping a job, or making sure that the dog gets walked twice a day, etc.). The adult, whosoever, such as parent, teacher, relative, neighbor, etc. must be there to be the "cheering" section -- "Yes, you can do it!!" "Yes, it's hard work, but you can do it!" and the adult must be there for the times the teenager reverts on those occasions to being a child - then the adult must be there to chastise, correct, maintain discipline with loving kindess and concern. Part of the adult's (parent and grandparents & other adults in society) responsibility for support is to provide the teen with the tools necessary to get the job done - the tools for his future - tools for the mind, body and spirit. They are: providing books and tuition for school, providing nutritious food and a safe homelife, instilling spiritual principles such as concern for others, etc.

With this being said, my feelings are that unless the extended family is willing to support you (the parent) in fulfilling your responsibility, they should not be put in a position of authority only to destroy what you are trying to build. And teens being teens, asisde from celiac3270 who is wiser than his years, will slip into "child mode", especially if they are in a situation where the adult authority is allowing them to just that.

As to the teen and teen-activities: well, I agree with celiac3270, being gluten-free is ripe for isolation . Bad enough teens use cigarettes, alcohol, etc. to fit in, I can't imagine how much worse than having a gluten-free diet around others who can eat anything. The teen would have to be a saint not to cheat on the gluten-free diet when the teen is with their friends.

You have a 2-front problem: 1) Confronting the other adults in your family and 2) Guiding your teen to make proper food choices when out of the house.

As to #1, those adults must be reprimanded gently for the last time. Perhaps one or more of them could attend a support meeting with her (perhaps just with her and you stay home, in this way they don't feel like you are watching over them). If they love her, they'll do it. If they don't then I don't see a choice other than to distance her from them until she acquires more maturity (however long that takes).
As to #2, this is the more difficult one. At least with the adults you can bar her from going there, but you really can't forbid her from interacting with people her own age. I would have to defer to celiac3270 on this one. If your teen is slipping off her gluten-free diet when out with friends and ending up feeling sick, then I am sure she knows what's she's doing wrong. Can the "gang" of her and friends meet at your home every now and then so that she can have control of the situation? Maybe some of her best friends can go to support meeting with her so that they can have a better understanding of her and her life?

I just hope it all works out for you as it's not easy.

D.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003




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