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My Husband And His Parents Don't Understand/believe In Celiacs


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11 replies to this topic

#1 Chloe's mom

 
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Posted 23 May 2011 - 02:26 AM

[font="Verdana"]Hi all,

I am sure that some of you must have had similar experiences and I was hoping you had some advice for me...

Our daughter Chloe was diagnosed with Celiacs just before her second birthday. She had been very ill on a daily basis and they eventually diagnosed her on her during her 4th hospital admittance.

Since taking her off Gluten 100% she is a different child. No more symptoms at all! I know following a Gluten Free diet is hard but our life post diagnosis is so much easier and less stressful.

My problem is twofold:

Firstly my husband does not take the decease very seriously at all and always makes me feel like I am over-reacting. He has done no research and has NO idea about cross contamination or what actually happens to our daughter when she eats gluten. I get very frustrated and angry because now that she is so much better it is like he has forgotten how ill she was. He keeps saying things like we really must try reintroducing Gluten again etc. The only thing that I can think of to explain his attitude is that having a child with Celiacs is tough and he is in denial. I just canít believe that he doesnít care. He is a good man.

Secondly my parents-in-law donít think there is anything wrong with Chloe. They live in England and were not with us for the last few months when she was the most ill. This is not their fault because we moved away but I think because they were not involved they donít realise how ill she was. One of them gave Chloe a big cookie on the first day of their visit and when she didnít vomit like she used to they had this ďI told you soĒ attitude for the rest of the visit. And the worst is that my husband agreed with them and gave me no back up what so ever which made me feel very alone and betrayed.

They even mentioned getting her retested to see if she still has it!?!?! Her Celiacs was confirmed with a blood test and biopsy. I tried to explain that to retest we would have to make her sick again for the test to be valid but they just looked at me like I was crazy. Why should I put Chloe through that again just to make them believe me???

No one in my husbandís family have made any real effort to read up on Celiacs and do not even have a basic understanding of how gluten effects our daughter.

And the scary bit is that I am pretty convinced that my mother-in-law and possibly my husband have the decease. I brought my mother-in-law a book about living gluten free and Celiacs in the hope that she gets tested and understands our daughters condition a little more.

Any advice or articles would be very much appreciated.

x
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#2 luvs2eat

 
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Posted 23 May 2011 - 04:36 AM

These kind of stories really chap my hide! Why on earth wouldn't they simply agree to do what the MOTHER thinks is best?? Would it be easier for them to accept something like a peanut allergy if they could see what happens when the baby is fed peanuts??

I had a MIL (from hell) who was so upset that I didn't feed my babies the highly-processed baby foods on the market, perferring to make my own baby food. I told her that I could grind up the box of baby rice cereal and sprinkle vitamin liquid on it and it would be equivalent to the crap in the box! I came home from somewhere to find her shoving the rice cereal into my kid saying, "See?? She loves it!!" I never left her alone w/ MIL again. What was it about MY WISHES about what goes into my kid did you not understand??

YOUR WISHES are even more important in this case! I am seriously astounded that people want to shove gluten into a baby when you have a blood work AND biopsy diagnosis.

I'm sorry for my rant. I don't really have advice for you other than never leaving your baby alone with them and continuing to police what they're trying to hand her.
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luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#3 kareng

 
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Posted 23 May 2011 - 04:52 AM

The Univ of Chicago Med Ct Celiac Center has easy to read info on the disease.


http://www.celiacdisease.net/treatment

this is from the Qestions section:

What are the implications of a person with celiac disease inadvertently ingesting gluten? Any long term
effects? How long does it take to recover from the gluten?
The ingestion of gluten—intentional or otherwise—reactivates the disease, triggering the
abnormal immune reaction that causes damage to the intestinal tissue.
Each person has a different healing time, but typically the reaction gradually subsides after
gluten is out of the system. While any ingestion of gluten is detrimental, it is repeated ingestion
of gluten that will cause long term damage—keeping the disease in its active state and exposing
to the risks that may occur in patient who just do not follow the diet



Hopefully, your hub will come around.
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#4 srall

 
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Posted 23 May 2011 - 06:38 AM

It's hard to deal with people who are so willfully ignorant. That may never change. Control what you can. Some advice I got on this board when my daughter was first diagnosed (gluten sensitive...I didn't even have a positive blood test or endoscopy to back me up) was to make sure I didn't leave her anywhere alone where someone might try and feed her something that wasn't safe. Now she's 8 and is really able to advocate for herself, but for a few months I just didn't leave her anywhere. Now I can send food with her. She's been so sick from accidents that she's not willing to take any chances.
I highly doubt you can convince these folks to come visit this board and spend a few hours reading peoples' stories, but the stories on this board have had a very powerful impact on me. I wish I had some more concrete, usable advice for you. These stories make me insane!
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#5 missbread

 
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Posted 23 May 2011 - 07:05 AM

[font="Verdana"]Hi all,

I am sure that some of you must have had similar experiences and I was hoping you had some advice for me...

Our daughter Chloe was diagnosed with Celiacs just before her second birthday. She had been very ill on a daily basis and they eventually diagnosed her on her during her 4th hospital admittance.

Since taking her off Gluten 100% she is a different child. No more symptoms at all! I know following a Gluten Free diet is hard but our life post diagnosis is so much easier and less stressful.

My problem is twofold:

Firstly my husband does not take the decease very seriously at all and always makes me feel like I am over-reacting. He has done no research and has NO idea about cross contamination or what actually happens to our daughter when she eats gluten. I get very frustrated and angry because now that she is so much better it is like he has forgotten how ill she was. He keeps saying things like we really must try reintroducing Gluten again etc. The only thing that I can think of to explain his attitude is that having a child with Celiacs is tough and he is in denial. I just canít believe that he doesnít care. He is a good man.

Secondly my parents-in-law donít think there is anything wrong with Chloe. They live in England and were not with us for the last few months when she was the most ill. This is not their fault because we moved away but I think because they were not involved they donít realise how ill she was. One of them gave Chloe a big cookie on the first day of their visit and when she didnít vomit like she used to they had this ďI told you soĒ attitude for the rest of the visit. And the worst is that my husband agreed with them and gave me no back up what so ever which made me feel very alone and betrayed.

They even mentioned getting her retested to see if she still has it!?!?! Her Celiacs was confirmed with a blood test and biopsy. I tried to explain that to retest we would have to make her sick again for the test to be valid but they just looked at me like I was crazy. Why should I put Chloe through that again just to make them believe me???

No one in my husbandís family have made any real effort to read up on Celiacs and do not even have a basic understanding of how gluten effects our daughter.

And the scary bit is that I am pretty convinced that my mother-in-law and possibly my husband have the decease. I brought my mother-in-law a book about living gluten free and Celiacs in the hope that she gets tested and understands our daughters condition a little more.

Any advice or articles would be very much appreciated.

x


firstly may i say how sorry i am that you are facing such a lack of support. I have also had problems in the past with reletives who think you are over reacting or who won't abide by your wishes reguarding what is fed to your child. I went to some considerable cost money wise, to cut out all the nasty glutened food in mine and my son's life, as well as the sheer emotional and practical effort, only to have a relative spoil it all by giving my son wheat products when they were left in charge of him despite me being very explicit in telling them what he can and can't have. But it wasn't only the coeliac issue, long long before coeliac was even suspected i tried to keep my son on a healthy diet appropriate for his age. When my back was turned he was fed all sorts of junk food, sometimes i would over hear them whispering to him " shh don't tell mama" GRRRRRRRRRRRRR .
Perhaps you are right and they are in denial, or even in the back of their minds they think they have coeliac too and to face up to it and the whole lifestyle change is just too daunting. Maybe there are lots of reasons they won't face up to it, the important thing is you are doing absolutely the right thing, you are taking it seriously, thank goodness! for your childs sake.!


http://www.celiac.co...Korn/Page1.html

http://www.childrens...50Flevel95.html
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#6 tarnalberry

 
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Posted 23 May 2011 - 07:47 AM

With your inlaws, I would say to just tell them "It doesn't matter if you understand or even believe. You just have to follow our rules."

With your husband, on the other hand, he's being downright dangerous. I'd sit down and have a discussion something along the lines of "While you keep wanting to deny or downplay this issue, you have learned NOTHING about it and are speaking from a place of ignorance. Her doctor has, using more than one test, confirmed that she has this condition, and if you want to even consider having input in her diet, you better get yourself educated because I will not allow you to harm her by feeding her something that will hurt her. You can go talk to her doctor, see a nutritionist, or read up on it on the internet; I don't care. But until you educate yourself, you don't get to play a role in the decisions on this one."

(Don't get me wrong, I'm usually all in favor of joint decision making by couples or parents, but not when it's done from a place of ignorance and fear.)
  • 2
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 WW340

 
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Posted 23 May 2011 - 07:53 AM

I would have a really adamant response to this situation.

Your daughter has been diagnosed with a chronic condition which requires a specific treatment as given by her doctor. If her treatment is not carried out by all involved with her, she can face life long repercussions, with vitamin deficiencies, week teeth and bones, just to name a few.

Failure to keep her safe on her diet is considered medical negligence. Children can be removed from the home for medical negligence. Children are removed for failing to provide proper diets for obese children or diabetic children regularly.

I would explain this to my husband and his family. I would tell them they cannot feed my child in an inappropriate manner EVER again. The grandparents rights would be terminated by me if they violated the rule ever again. I would tell them that the child will be retested at some point in the future and must show that she is being kept on a gluten free diet, whether they see the effects or not, the tests will.

These people will never take this seriously until you seriously enforce the rules.

I would tell them all that I would never risk my child's health because they don't get it. They need to get with the program and now. Would they really keep feeding a diabetic child sugar? You don't see the effects of that right away either.

This is not about the Mother's wishes. This is an absolute and must be treated as such. Like any form of abuse, this cannot be tolerated.
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Positive Bloodwork January 2007
Positive Biopsy Feb. 2007
Gluten Free since January 2007

HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,9)

#8 kareng

 
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Posted 23 May 2011 - 08:44 AM

I would have a really adamant response to this situation.

Your daughter has been diagnosed with a chronic condition which requires a specific treatment as given by her doctor. If her treatment is not carried out by all involved with her, she can face life long repercussions, with vitamin deficiencies, week teeth and bones, just to name a few.

Failure to keep her safe on her diet is considered medical negligence. Children can be removed from the home for medical negligence. Children are removed for failing to provide proper diets for obese children or diabetic children regularly.

I would explain this to my husband and his family. I would tell them they cannot feed my child in an inappropriate manner EVER again. The grandparents rights would be terminated by me if they violated the rule ever again. I would tell them that the child will be retested at some point in the future and must show that she is being kept on a gluten free diet, whether they see the effects or not, the tests will.

These people will never take this seriously until you seriously enforce the rules.

I would tell them all that I would never risk my child's health because they don't get it. They need to get with the program and now. Would they really keep feeding a diabetic child sugar? You don't see the effects of that right away either.

This is not about the Mother's wishes. This is an absolute and must be treated as such. Like any form of abuse, this cannot be tolerated.



To elaborate on the neglect issue: This is in the US, I'm not sure in other countries. Also, the fact that you let the child around someone you know is hurting them, is also grounds to take a child away from you. However, no one is going to rush in to take her away if you are still in the learning curve. This is a hard one to prosecute but you don't want to get into the US social services system. In some places it is hard to get out of.
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Once again, we come to the Holiday Season, a deeply religious time that each of us observes, in his own way, by going to the mall of his choice. - Dave Barry
 
‚ÄúThe main reason Santa is so jolly is because he knows where all the bad girls live.‚ÄĚ  - George Carlin
 
‚ÄúOne can never have enough socks," said Dumbledore. "Another Christmas has come and gone and I didn't get a single pair. People will insist on giving me books.‚ÄĚ  - J.K. Rowling, Harry Potter and The Sorcerer's Stone
 
 
 
 
 

 


#9 Salax

 
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Posted 23 May 2011 - 08:59 AM

How frustrating!! I still for the life of me can not figure out why people struggle with the concept of Celiac Disease, and people not eating gluten. It's a non issue, we don't NEED gluten to live. Water yes, gluten no. It's really not that hard. People with peanut allergies survive just fine without peanuts. Why is it that people force gluten down our throats when we can't eat is beyond me. :ph34r: Ok, done ranting.

Sorry you have to go through this. Personally I would take a more extreme approach with the hubby and the grandparents, something like when they are about to sit down and eat, go an get a bottle of household cleaner, put just a alittle bit (a squirt) or something on their food and just smile. When they freak out and ask why, then you can explain...your feeding my daughter posion, so I figure you don't mind if I do the same to you. <_<
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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#10 seezee

 
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Posted 23 May 2011 - 10:51 AM

It seems you have to convince your husband. Would it help to bring him to talk to the pediatric GI who made the diagnosis or the pediatrician? You know him best. What would convince him? I took my husband and father to the celiac class at Children's Hospital Boston. It was a pretty clear hour-long course that all of us took, my daughter included. I thought it was really helpful. They had a powerpoint presentation and a 50 page handout that explained how the disease works and the importance of following the diet. The presenter was a nutritionist and she answered all our questions. The GI dept. at Children's Hospital Boston also has social worker who specializes in celiac and the social issues helping with this. I got a lot of help from her when my daughter's teacher behaved like I was ridiculous for worrying about a few crumbs. There are also some good youtube videos on celiac from various celiac centers.
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#11 adab8ca

 
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Posted 23 May 2011 - 02:37 PM

Celiac is an autoimmune disease...Doctor proven and apparently she responds to the diet! You can ask him if she was diabetic and insulin made her feel and act SO much better, if he would suggest to just try stopping the insulin. Obviously, she may not need it. Lots and lots of information out there on diabetics who do not get their insulin and it isn't pretty. Lots of information on Celiacs who eat gluten and it is not pretty as well...


I also agree if you can get him to talk to the doctor, perhaps a medical opinion from the horse's mouth will help him believe the seriousness of this.
If all else fails, post his email address and his in box will be filled with our horror stories of being so, so sick and the permanent damage that has been done. That is a little tongue in cheek, but sometimes you need brute force.
Good luck!!!
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
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Only real symptoms are huge weight loss and neuropathy

#12 Chloe's mom

 
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Posted 25 May 2011 - 04:36 AM

I am at work so can't reply fully right now but I just wanted to thank you all for responding! You have def given me a lot to think about and look into.

Will let you know what happens soon.

Take care and thanks again,

Wendy
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