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

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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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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 glutenintentional or otherwisereactivates 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 damagekeeping 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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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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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 can

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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.)

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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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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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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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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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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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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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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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