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Electra

Do I Tell Family Or Not?

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Ok here is my issue. I've been diagnosed with Celiac and even though my daughter was tested, it was her skin problem that led me to Celiac in the first place, so I know that she has it!! On X-Mas we are getting together with my hubbies family to open gifts. The common thing is for everyone to just hand a kid a cracker if they want one, but I'm scared they will offer my daughter something and not even check with me. I don't want her to have any more gluten because she is beginning to have scars from the skin sores she gets. She's only 2 and my problem here is that I really do not want to tell hubbies family that I have this quite yet. His sister knows and I'm sure she told her Mom, but I'm not sure I'm ready to deal with everyone asking me about it right now, but I need them to know that my daughter can not be fed ANYTHING unless I approve it first!! My mother in law is also very old school and she is one of those that would just do it behind my back anyways and chalk it up to "Oh a tiny bit won't hurt every now and then". Right now she's my main babysitter and there is no way I can get to all of our appointments without her, so how am I going to get it through her head that this is something that will hurt my daughter for life and that this is serious? I guess I'll just have to follow my daughter around and make sure no one gives her anything to eat UG, I really HATE this right now. Maybe we won't even go :-( This is just way to stressful at a time when I really just need to heal!!

I'd like to e-mail them all and just give them a heads up, but I think that most of them will just think I'm being overprotective and it will be seen as a way of me "trying to have control over my daughter" and that's DEFINITELY not the case here.

What would the rest of you do?


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I know that it may be hard, but I would tell the family. If you are afraid that they will feed DD without your knowing, I wouldn't think you had much choice but to tell them and impress upon them the importance of her sticking to a strict gluten-free diet. Bring plenty of food along that she can eat and maybe let them give her some of that stuff.

(((HUGS)))


Kim

"Life isn't about how to survive the storm

but how to dance in the rain."

Positive bloodwork 1/9/06

gluten-free since 1/12/06

Very positive dietary response

DS (12 years old)

Biopsy 7/7/06 ~ Diagnosed Celiac 7/12/2006

gluten-free since 7/15/2006

DD (almost 6)

HLA-DQ2 positive

Celiac Bloodwork negative 2 different times

Still eating gluten for now.

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Guest cassidy

I have a couple of ideas.

First, with your MIL I would print out a bunch of info on celiac, sit down with her, and almost scare her into realizing this is serious and even a crumb will hurt you and your daughter. If she is your main babysitter then you have to get her to realize what is going on. Maybe your husband can help get this across.

If you don't want to deal with the family at Christmas, can you just say something vague like she has been having stomach issues and you don't want her fed anything because it might not agree with her. I have small neices and nephews and I never feed them anything without asking. I also know one of them has had "toddlers D" and she was eating pretty much only rice and bananas for a while. That might buy you some time so you can deal with the family when you are ready.

My mother and I are gluten-free and we are having dinner at my in-law's. I'm also pregnant and I won't want anyone feeding my child gluten. It was hard in the beginning because they asked a lot of questions and wanted to get me to eat their veggies and things that should be safe. Now they understand that I bring my own food and I will be happy to make something for the table that I can eat as well.

As you know, everyone has different parenting styles and this just comes down to them respecting your wishes - don't feed my kid! I'm sure you will get that across when you are ready.

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It sounds like you'll need to give her some medical "proof" to show that you're not just being an overprotective mother. How about a copy of Dangerous Grains for Christmas :) I can't remember if you had positive bloodwork or scope for your daughter, but if so, you could bring that. I would also bring a bunch of food she can eat. Then you can tell grandma that sh can feed her anything that you've brought.

I remember someone on here having a list of good food and bad food that they gave to the grandparents when the kids went to stay for the weekend. Maybe whoever it is will post it.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Is your pediatrician on board with your daughter's diagnosis? If so, it's a good idea to say that the pediatrician says that she can't have ANY gluten, and that the gluten is what caused your daughter's terrible rashes--next step if gluten continues to be ingested is severe autoimmune disorders.

I would let the family know ASAP. Dangerous Grains is an interesting book, and makes a lot of very good points; unfortunately, I don't think that it is well-written, and the documentation is not presented in a scientific enough manner, and the documentation is not done well. All those littel personal stories offered as "proof," where the main character is only identified by first name--come on, if we saw that kind of unprofessional presentation in a book claiming to have the magic cure for cancer, it wouldn't convince anyone with any sense. I am not disagreeing with the content of the book, mind you, just the presentation. I think printing out the University of Chicago study might be more effective.

I would also apologize like mad in advance for throwing a wrench into the food works. NO, I don't think it's something you ought to HAVE to apologize for! I just think that it might be a good idea, given how you describe the situation with your in-laws. If you offer to help convert favorite foods to gluten-free, or better yet, ask THEM on how THEY woulds like you to handle it at Christmas at their house, that would keep them from feeling like you are marching into their turf and telling them how to run things.

For example, "OMG, I am so upset--we just found out our daughter has celiac disease and anything with gluten is DANGEROUS for her. I am SO sorry about the timing of this! Would you like me to bring everything my daughter can eat? Would you like me to make some of the CHristmas dishes at home and make them gluten-free so you guys don't have to worry about it? Would you guys like me to provide gluten-free crackers for all the kids so nobody feels left out? This is going to be such a pain, but unfortunately, this is what the doctor said and what could happen to DD if I slip up. It's like having a peanut allergy--if somebody goofs and hands her a wheat cracker, it could land her in the hospital," etc. etc.

You didn't mention hubbie's reaction to all this--is he on board with you, or is he part of the problem?

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Guest Villanfam

I agree that you should educate them as much as possible (ie. print out info on celiac disease and even pics. of DH) to show them that in fact, this IS what you and your daughter have. If your MIN has a computer invite her to join the forum, so that she can ask questions. You may suggest that it may be helpful to her and a timesaver, when babysitting, so that she can quickly and easily find out if a certain food is okay to feed to your Daughter. It gets her involved in your daughter

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Good grief girl, you tell them! Or in three months when your head stops spinning, how will "and this is reallllly serious and important, but I didn't tell you at Christmas because it was a pain" go over? :)

I would keep it simple. Call the MIL, say you've both been diagnosed, you don't know enough about it right now to be confident in educating her, you'll just bring food for the two of you so nobody has to stress about it. Back it up with the pediatrician. Back it up with a printout from this website, but don't overdo it.

If MIL is the main babysitter, she'll see the consequences of gluten exposure. Typically, after someone is gluten-free for some time, a gluten exposure produces a reaction greater than they orginally were having. And remember, you're modelling behavior for your daughter now. You don't want to apologize, but you don't want to grossly inconvenience people, either.

You aren't overprotective. If she had diabetes, you'd expect people to accomodate her without a fight. You and she have a right to be safe, and healthy!

joanna


Mom/wife to celiacs dx 12/03 and 12/04

Success is never final and failure never fatal. It's courage that counts -George Tilton

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:blink: You need to sit her down.. alone and tell her. We all have been throught the shock and pain. And being that.... that is your baby sitter... I think that the "mother inlaw" would be happier if you told her. Then she doesnt have the fear of giving the baby the wrong things. I would just tell them that there were tests done and this is the diagnosis. PERIOD> and this is how it can be corrected. I went through a horrible depression.... and my friends here... helped me. As they will you... There is a hundred things that are gluten free... that you dont need to stress about...

But I would tell her... get it over with.... tell her your self. in stead of the grapevine...

Because if you tell the family and the mom ... There is nothing to discuss.

I would tell her... or have your husband tell her...

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Is your pediatrician on board with your daughter's diagnosis? If so, it's a good idea to say that the pediatrician says that she can't have ANY gluten, and that the gluten is what caused your daughter's terrible rashes--next step if gluten continues to be ingested is severe autoimmune disorders.

I would let the family know ASAP. Dangerous Grains is an interesting book, and makes a lot of very good points; unfortunately, I don't think that it is well-written, and the documentation is not presented in a scientific enough manner, and the documentation is not done well. All those littel personal stories offered as "proof," where the main character is only identified by first name--come on, if we saw that kind of unprofessional presentation in a book claiming to have the magic cure for cancer, it wouldn't convince anyone with any sense. I am not disagreeing with the content of the book, mind you, just the presentation. I think printing out the University of Chicago study might be more effective.

I would also apologize like mad in advance for throwing a wrench into the food works. NO, I don't think it's something you ought to HAVE to apologize for! I just think that it might be a good idea, given how you describe the situation with your in-laws. If you offer to help convert favorite foods to gluten-free, or better yet, ask THEM on how THEY woulds like you to handle it at Christmas at their house, that would keep them from feeling like you are marching into their turf and telling them how to run things.

For example, "OMG, I am so upset--we just found out our daughter has celiac disease and anything with gluten is DANGEROUS for her. I am SO sorry about the timing of this! Would you like me to bring everything my daughter can eat? Would you like me to make some of the CHristmas dishes at home and make them gluten-free so you guys don't have to worry about it? Would you guys like me to provide gluten-free crackers for all the kids so nobody feels left out? This is going to be such a pain, but unfortunately, this is what the doctor said and what could happen to DD if I slip up. It's like having a peanut allergy--if somebody goofs and hands her a wheat cracker, it could land her in the hospital," etc. etc.

You didn't mention hubbie's reaction to all this--is he on board with you, or is he part of the problem?

Well I'm not sure if my pediatrician is on board with this or not. He has a lot of the "normal" misconceptions about Celiac. He does openly admit that I probably know more about Celiac then him so he has set up an appt for my daughter with the pediatric GI dr. and one with a dermatologist for her DH. From what I read a diagnosis of DH is enough for them to say you have Celiac, so I'm hoping the skin test is all we need. If my daughters pediatrician does not back me up on this one then I'll just switch my daughter to my family dr and he will probably just diagnose her based on me having it. It's good to have a family dr. that your sister in law worked with for years ;-)!!

I actually ended up telling some of the family because they were sending e-mails back and forth about food for the holidays, so I just let them know that my daughter and I had Celiac Disease and we would be bringing our own food from now on. I also included several links in case people wanted to read up on the disease. When I go to the X-Mas party I'm also going to bring my folder full of printouts on Celiac in case I need to back anything up lol!!

My MIL already made a comment that she had heard of people having this and it's OK to "cheat once in a while" and I pretty much jumped on that comment and completely told her that was a myth. Just because the damage heals does not mean that you can do more damage and just hope that it won't cause long term damage. That's why the risks of some cancer and other diseases are higher for Celiac patients UG!!

Right now I'm trying the best I can but since I've been so sick and have a 50+ hour a week job and 4 kids of my own I just can't seem to find the time to eat healthy so I'm grabbing what fruits and veggies I can, but I'm so exhausted and I hurt so much that I'm just trying to get by until the holidays are over. I'm still very overwhelmed but I'm just trying to take it one day at a time!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Actually my MIL is one of those very old school type of people. You can show her tons of proof that you DO NOT put butter on a burn but she will still reach for the butter if someone is burnt. She just believes what she believes and shuts everything else out. She can't even set an alarm clock or turn the tape over in her answering machine so there is no way she could use a computer LOL!!

I think I am just going to have to take specific food for my daughter if she goes to MIL's house and make it clear to her that if she can't follow what is best for my daughter I will know because my daughter will get sick and she won't be allowed to watch her anymore. It's that simple. My life will be a little harder but it's worth it if my daughter is healthy.

My MIL gave my daughter 2 ritz crackers a few days ago and she's had diarrhea so badly every since that she has a massive raw diaper rash and she won't eat anything. She's also been exhausted, sleeps most of the day and is tempter tantrum cranky!! My MIL thinks these tantrums are normal but she only has them when she's been Glutened and they go way beyond the normal tantrum, but you can't convince MIL of anything lol!!

The thing that bothers me the most is that others ASSUME since my daughters tests came back negative that I am overreacting and she does not have this disease. They just don't get the fact that it is very common for 2 yr. olds to test negative and that she had stopped eating when they tested her because she was sick so there was probably no gluten in her system. There is just NO OTHER explanation for my daughters skin condition then Celiac especially since I have been diagnosed with Celiac!!

I'm beginning to think that the heredity portion of it is way higher then they think it is. I also suspect my 5 yr. old has Celiac. He has had chronic vomiting problems since he was born and they have not been able to figure it out so they diagnosed him with allergy induced cough which causes cough induced asthma which causes asthma induced vomiting, but I have had asthma my entire life and he doesn't wheeze at all, he just coughs until he throws up his food then goes and plays!! Hmmmmmmmmm that's suspicious. He also gets every flu there is out there and looks very pale most of the time. Recently he's been off the wall hyper and he's never been a hyper kid in his life. I've been grasping for straws wondering why a calm kid could all of the sudden start screaming bloody murder when something doesn't go right for him and be off the wall hyper, but he's stopped throwing up so much so I think the gluten is staying in his body now and causing his symptoms!! I'm getting him tested very soon.

Sorry for the book I just get carried away a lot!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I'm so sorry you're having such a rough time. I only have 3, can't imagine how difficult it must be with 4 and a 50-hour work week on top.

Does your husband "get it?" If so, then the easiest thing by far for you would be to make the entire house gluten-free. As for your exhaustion (a 50-hour work week would exhaust anyone without kids!), simplify as best you can. Get corn tortillas instead of bread for sandwiches (cheaper than commercially made gluten-free bread, which tastes like a dried sponge anyway); most sliced meats are gluten-free (but not all, so you gotta read labels); mayo is safe. Fritos aren't the healthiest thing in the world, but they are gluten-free!

Here's the toughest part: if your mother-in-law cannot be trusted to maintain your children's gluten-free diet, then you need to find another babysitter.

Obviously, that is not the best-case scenario, so to tip the odds in favor of getting your mother-in-law to "get it," you might want to start a thread asking for recommendations for a doctor who is celiac-literate in whatever city you are in or closest to. Then, when you have your appointment, explain your predicament about your MIL to the doctor so that he or she can hopefully talk directly to your MIL, telling her just how much a couple of crackers can harm your precious grandchildren.

You don't mention your husband. Is he not in the picture? Or is he part of the problem?

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i think you need to let your family know what is going on. it's not too fair for your daughter to be subject to getting gluten because you dont want to deal with it during this stressful time. email your fam members in advance with a quick over view of celiac and what she can/can not eat, and ask them nicely please dont feed her anything... you will be doing that, and yes a little bit does hurt (my grandparents are the same way, and i have to tell them even the smallest amount makes me feel sick) do not not go celebrate the holidays beacuse of celiac disease, it's a tough disease, but you can't let the disease win and you and your family lose out on spending time with each other. When the holidays are over sit down with your MIL and explain the disease in full and what precautions must be made so she can babysit and not get your daughter glutened. it's not worth stressing over and ruining your holiday time!

Good luck!!

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I'm so sorry you're having such a rough time. I only have 3, can't imagine how difficult it must be with 4 and a 50-hour work week on top.

Does your husband "get it?" If so, then the easiest thing by far for you would be to make the entire house gluten-free. As for your exhaustion (a 50-hour work week would exhaust anyone without kids!), simplify as best you can. Get corn tortillas instead of bread for sandwiches (cheaper than commercially made gluten-free bread, which tastes like a dried sponge anyway); most sliced meats are gluten-free (but not all, so you gotta read labels); mayo is safe. Fritos aren't the healthiest thing in the world, but they are gluten-free!

Here's the toughest part: if your mother-in-law cannot be trusted to maintain your children's gluten-free diet, then you need to find another babysitter.

Obviously, that is not the best-case scenario, so to tip the odds in favor of getting your mother-in-law to "get it," you might want to start a thread asking for recommendations for a doctor who is celiac-literate in whatever city you are in or closest to. Then, when you have your appointment, explain your predicament about your MIL to the doctor so that he or she can hopefully talk directly to your MIL, telling her just how much a couple of crackers can harm your precious grandchildren.

You don't mention your husband. Is he not in the picture? Or is he part of the problem?

Yes my husband is in the picture, but he works for UPS so he is NOT a support for me in the least. They own you there and there is absolutely nothing we can do about that. I'm trying to convince him that I need to quit my job for a couple of years to get myself and my daughter healthy, but he gives me the "well you'll have to give up all the kids sports" speal and I cave UG!!

Hubby is trying very hard, but he doesn't quite understand how bad Celiac is and the behavioral changes it can cause. We got in a fight the other night because I called him on his cell during the day and accused him of moving something he didn't move and later when I found it I apologized and explained that I don't mean to do that but when I'm this sick I just say things I can't always control and after the fact I realize what a B!TCH I was. I seriously do not know I'm doing in when it's happening, so I can't stop it. Well even though I apologized he insisted on rubbing it in after he got home and insisted on me knowing that he was right, so I broke down crying and we got in a huge fight because I already beat myself up about it enough and he needs to understand that this isn't me and as soon as I get this under control that things will change. He's lived with this progression for so long now that I'm not sure he actually believes it's a disease. I think he just assumes it's another diagnosis that will not change anything. I've read a ton of literature to him, but he just seems distracted and disinterested, so the other night I lost it and yelled and screamed at him that I could have died and I still could if I don't fix this fast, and then later he said I didn't know it was that serious. I felt like wacking him upside the head because we've been over and over this, but he still will probably revert back to the same.

I can't possibly convert my entire household to Gluten Free (although I would love to) but I have 3 children that are very picky eaters and emotionally I could not handle all of them hating me all at the same time and blaming me for making them change. I think over time I can convince them, but DH has eating problems as well and there is no way I can have that fight with my kids when their father sets a bad example. Believe me I've been over this a million times over the years and it always ends up coming back to me not being able to make the kids eat things that their dad refuses to eat.

As you can see I have so many issues to deal with here that my head is spinning. I have no one to talk to and no one that understands. The other day I was trying to talk to my sister in law about my frustration and I said "I just can't do all this anymore" and she said "Yes you can you will because you have to" and I wanted to blow up at her. I just want someone to see my side and tell me that it's ok to quit my job and take care of my health and my children. Why are material things so important to everyone. When did your health take a back seat to those things? I think others assume because Celiac can be controlled by diet that it's minor and that you can just go off Glutan and heal overnight and everything will be perfect!! NOT THE CASE!! Especially when you have just got a diagnosis and have to wait months to get into the GI specialist!!

Man this sucks!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Just to let you know, if your 5 year old son is on a gluten free diet for more than a couple of days, the blood test may come up negative. According to Dr. Michelle Pietzak, you need to have the equivalent of two pieces of wheat bread every day for about 2-3 months in order to get a fairly conclusive blood test. With you having Celiac disease, the easiest way to see if he has it is to have him go gluten free and see if after a few weeks if the behavior and problems change.

I understand and sympathize with you how difficult it must be with all the work and kids. My son was two when he was diagnosed (and hospitallized) and it was just when I got back from the hospital with our newborn. It felt overwhelming at first, and it was difficult for even the sympathetic family members to understand how diligent we had to be with the diet. But after much insistence, they all understand now. Even the ones who kept trying to tell me "a little bit won't hurt now and then" or "he'll grow out of it". And now that he's three, we talk about how he gets to eat "yummy gluten-free food" and not the gluten food since it makes him sick. We watch commercials together, cooking shows, and look at food magazines to discuss what he can and can't eat and how we will try to make certain things gluten-free. And after being diagnosed for about three months, he also knew not to eat other kids' food.

As for you, after the holidays are over, you'll hopefully have time to look for easier food to prepare and buy that's gluten-free. And if you're out and about and forgot some food, remember you can always have Fritos :)

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