Celiac-when Family Members Refuse To Get It

[Sasyeyez]

HI everyone! I am new to this forum....wish I would have found it long ago! I have very much enjoyed reading all of your posts!

I have a similar issue.....But it involves an ex-husband. I was diagnosed with celiac disease a couple of years ago, and have done MUCH better since! I am in the process of having my oldest daughter (9) tested for celiac disease. One of the blood tests came back already and it showed she has the DQ2 gene, so she is a carrier they said. Still waiting on the other blood work. In the mean time.....I was recently divorced (Feb 2007). Of course while with her all the time, me fixing all of the meals, I was able to control what she ate, now she goes to visit her dad every other weekend and he lets her eat whatever she wants!

He has NO clue about the disease, doesn't care to learn and thinks I am "depriving my child of kid foods". And tells her that I am making this all up!! He is just awful. He will take himself and both daughters to CiCi's Pizza, they ate Lasagna last weekend. He tells her that he will spank her if she doesn't eat!! I am just at a lose to why he wants to hurt his daughter! He is not the one that has to stay up with her for 2 days/nights with stomach ache/throwing up when he sends her home.

As soon as I get all of the paperwork, I have no other choice I guess and take him to court over it???? I have already gotten CPS involved, but they are clueless about this disease, and they can't stand next to him everytime he gets the kiddos. I'm at a loss.....

SO....any suggestions?

[Mom23boys]

  Sasyeyez said:

As soon as I get all of the paperwork, I have no other choice I guess and take him to court over it???? I have already gotten CPS involved, but they are clueless about this disease, and they can't stand next to him everytime he gets the kiddos. I'm at a loss.....

It looks like you are on the right track. Health must rule over fun food. In our situation our counselor said feeding them "off diet" was the equivalent to child abuse.

[JNBunnie1]

I think you're right to go to the authorities, he shouldn't be allowed to see his kids if he can't take proper care of them when he has them. Here's a good medical description of Celiac disease from the homepage https://www.celiac.com/st_prod.html?p_prodid=1428 maybe you could print it out and show it to CPS next time you meet with someone, and they can confirm it with one of their staff doctors. I think you'll have to get a positive diagnosis for her before they'll honor it though.

I'm so sorry that this is such a poor situation for your daughter, it must be hard to have a Daddy who doesn't want to take care of you.

Don't forget testing the other kids!

[Guest mmc]

My mom is the same way, except she actually told me I need to stop with the diet because I'm skinny enough. Yes, I am 5'10" and weigh 85 lbs. But what she refuses to accept is that if I go off my diet, I will get thinner, and will end up in the hospital. I have tried to explain to her that the diet will help me GAIN weight, not lose weight, but she doesn't understand, I've bought her books, given her articles, recipes, and everything. When we go home on vacation, we stay with my father in law, who is a bit more understanding. The first thing we do is go grocery shopping. Then I make a week's worth of meals and freeze them. Then, I have all the meals I need to take to dinner at my relatives' houses, not inconveniencing anyone.

The trouble I have found with this is that my relatives get insulted. They see it as me being "too good" to eat their food (I'm a chef), instead of for my safety. I actually made the mistake once of saying to my mother-in-law "I'm sorry, but the food you made makes me sick." Not the best choice of words, I admit, but I was at the end of my rope. Now, I've just come to a point where I don't care. My children are now gluten free and I take food for all three of us. My husband usually spends the 45 minutes it takes to explain to everyone why we are unable to eat what everyone else is.

You just have to say... I've done everything I can to explain it, if they don't get it, it's no longer my problem...it's theirs.

[Guest andie]

OK guys, get this one.

I started my 10 year old son on gluten-free and while I was at it included my husband who has autoimmune problems to see if any improvement. Not much with my son. Still having many problems. AMAZING results with my husband. He only eats what I tell him to eat. My son on the other hand is kind of dependent on what he's told he can have. My son always asks if he's not sure because some of the ingredient lists are beyond him.

My son has been having nausea on and off for 2 weeks. They both swear they are not cheating.

Tonight my husband took my son to his hockey game. After the game he bought him french fries

(and we're talking Arena grease here) and an Oreo cookie chocolate bar! Since bedtime tonight my son has been up 3 times threatening to barf!!!!! He is looking to me to make him feel better and there's nothing I can do for him!!!!

I am not gluten intolerant. It seems like I spend most of my time in the kitchen these days trying to make a diet that is as 'normal' as possible. Concentrating on not "glutening" them has been an obsession. The word FRUSTRATED just doesn't go far enough.

If not for my son I would feed this man some decadent desert made entirely of wheat!

Even though he feels so much better, I just cannot seem to get through to this man!

He is not glutening our son on purpose, he just REFUSES to get the concept.

I work 12 hour shifts and am gone for all meals 3 days in a row. Short of laying out a menu with all ingredients attached or cooking 3 times as much on my days off I'm at a loss as to what to do.

We have been on the diet for 4 months. Is that not enough time to educate him?

I have advised my son to always make sure he takes fruit with him and if he gets hungry and is unsure just to eat the fruit. Or call me on my cell phone.

So my advice on the board? Give up on your mother and take your own food. Better yet (because she is your mother) eat at your house and feed her gluten free food! Get her to help prepare.

She can't go wrong if there's no gluten in the house. Maybe she would learn better by doing.

Ask her what she would like to eat and show her how to substitute.

Andie

  angel42 said:

I don't know what to do anymore about my mom. I have explained how serious Celiac is till I was blue in the face. She keeps telling me to go back on gluten since living gluten-free is just so "inconvenient" like this is just some fad diet. She has absolutely no recollection of how sick I used to be and no recognition of how much better I am now. Is there anything to do with people like this? Will they ever get it or should I just give up?

[Guest andie]

Angel

WOW! Single mom with 4 kids under 9! What a load, and doing it yourself. Good for you.

I thought spanking was almost outlawed? it is in Ontario. That in itself had better have good reasons if he is seen. Is the 9 year old mature enough to say 'No dad i can't have that!' Is the restaurant thing all about what he wants to eat? Maybe if some of the info comes from her and she tells him how awful she feels, would he listen? Sometimes advice from someone you are divorcing is an invition to be a prick! Documentation is a must. Both for CPS and to help the courts decide on ruling and conditions of visitation. It is also a requirement for CPS to be aware of this condition as there are many children in the system with it and would have to be placed in an appropriate environment. When they say they know nothing, stress to them that THIS IS THEIR JOB! And in fact may be brought to bear in court and they would look pretty damn foolish telling a judge, 'Gee I know nothing about it!" Especially when you can prove they HAVE been informed.

If they know nothing about it give them some web sites to educate themselves.

Also inform your ex that this will be an issue during ruling of custody and that he had better educate himself. Perhaps his visitation should be restricted too between meals.

If it is a messy divorce I think he would think twice about learning the diet if it comes to that.

Use another analogy. Something he is familiar with. ie if the child had epilepsy and dad refused to give antiseisuze meds, does he think that would effect visitation rights.

? Try the same thing with CPS. What would be their stand on an issue like that? Gluten free diet IS the treatment and have literature to support that.

Andie

  Sasyeyez said:

HI everyone! I am new to this forum....wish I would have found it long ago! I have very much enjoyed reading all of your posts!

I have a similar issue.....But it involves an ex-husband. I was diagnosed with celiac disease a couple of years ago, and have done MUCH better since! I am in the process of having my oldest daughter (9) tested for celiac disease. One of the blood tests came back already and it showed she has the DQ2 gene, so she is a carrier they said. Still waiting on the other blood work. In the mean time.....I was recently divorced (Feb 2007). Of course while with her all the time, me fixing all of the meals, I was able to control what she ate, now she goes to visit her dad every other weekend and he lets her eat whatever she wants!

He has NO clue about the disease, doesn't care to learn and thinks I am "depriving my child of kid foods". And tells her that I am making this all up!! He is just awful. He will take himself and both daughters to CiCi's Pizza, they ate Lasagna last weekend. He tells her that he will spank her if she doesn't eat!! I am just at a lose to why he wants to hurt his daughter! He is not the one that has to stay up with her for 2 days/nights with stomach ache/throwing up when he sends her home.

As soon as I get all of the paperwork, I have no other choice I guess and take him to court over it???? I have already gotten CPS involved, but they are clueless about this disease, and they can't stand next to him everytime he gets the kiddos. I'm at a loss.....

SO....any suggestions?

[Guest sammya]

HI everyone,

I am glad someone brought up this issue......

I was diagnosed with celiac disease a month ago via biopsy and i also had gene testing done which told me that i have the DQ2 and DQ8 gene...

The thing that annoys me is that my mother and mother in law both just don't get it

My mum just won't listen to what i am trying to tell her, and my mother in law keeps telling me that the doctors are wrong and that it is more likely depression

This is were it gets even more annoying!!!! I had my children gene tested and also had TTG tests done on them ( i have 4 kids in total).. My 6 yr old daughter is showing symptoms for the past 5 months but came back with a normal TTG result but she has the DQ2 gene and the one that goes with it!!! Were as my other 3 kids came back with the DQ8 gene..... My 5yr son also came back with elevated TTG results so my GI who ordered the tests told me to put him gluten free as he doesn't see the need for biopsy after my results and his results.. This i understand but unfortunately my family doesn't! My son complains of stomach pains occasionally, but my mother in law does not believe that he has Coeliac(celiac) as her words were " HE's AS HEALTHY AS A BULL" But, she also believes that it's wrong with me allowing the doctors to perform tests on my 6yr Daughter. They believe that she is fine and that if i allow the doctors to keep digging it will turn my daughter into a hypochondriac which is what everyone was starting to think i was until i was diagnosed!!

But you tell me.... What 6yr old would constantly complain of stinging pain just below the navel, regular diarrhea and complains of the pain more after eating pasta's and so forth????

Any one wish to tell me how to help them realise that some people can appear perfectly healthy and yet have Coeliac(celiac)???????????

Sorry for the long post.... But i think i needed to vent my anger..... SORRY!!!!!!!

[Sasyeyez]

This is a great thread....but at the same time it just makes me BLAH. It is just hard for me to comprehind how family just doesn't believe us!! Thanks for all of the post/replies I appreciate them!

Andi....Yes she is pretty grown up for her age. Around my family (that always asks first), she will tell them "No, Gigi, I can't have that." And it's no big deal. She is so great at it! It really shocked me to be honest with you. But she is very good at knowing what she can and can't eat, and ALWAYS asks or tries to read the label herself . But I think her dad is very intemidating to her. And she doesn't want to be disobedient, but at the same time she does try to tell him she can't eat that stuff.

Oh...Thanks for the koodos for the munchkins, but I am actually engaged and the 2 wonderful little boys are his. The 2 girlies are mine from the previous marriage. But again! Thank you! (And I do have my hands full, but I have a wonderful man that helps me so very much! He's just great!)

Still waiting on the other test to come back.....