How Can I Help My Ex-wife Understand Celiac?

[Idontlikewheat]

Hi Everyone,

This is my first post here ... first of all let me thank you all. I only learned that I have celiac disease a few weeks ago. I'm 39 years old, and this realization explained so many things about my life, that I could never understand until now. I'm sure most of you know the kind of thing I'm talking about.

I have three children who live with my ex-wife. Two of them have symptoms very similar to many of the symptoms I have had for many years ... enough to make me very suspicious that one or both of these kids may have inherited the celiac from me.

The problem I have is that my ex-wife doesn't take this seriously at all. I guess she thinks celiac disease is only a minor inconvenience. She is not even willing to have the kids tested, because she is afraid that if they test positive, it will be very difficult for her to feed them without gluten. *sigh*

I've tried to tell her that in my experience *unrecognized* celiac disease is not an inconvenience, but rather a horror ... but she doesn't really believe me.

So. Can any of you suggest articles that I can share with her? Anything about celiac and children specifically would be excellent. Also, anything that explains in a simple but powerful way what this disease is, and what effects it can have if it is not recognized. I would like her to see that celiac is not a joke, and that it may be better to test the children and consider a gluten-free diet, even if that is not easy.

Many thanks!

[debmom]

I think I would ask her if she would willingly feed them a little bit of arsenic everyday. Eating gluten if you are intolerant or have celiac is similar to eating a bit of poison daily. Even after my daughter spent weeks in the hospital and suffered from terrible pain for almost year, I still have to explain to friends and extended family that a little bit of gluten is dangerous to her.

You might also try making or buying some gluten free food to take to your children to show her that there are many options out there. I think the idea of cooking gluten free is daunting to many people who want to deny there might be an issue, but once they learn that it's not difficult to go on a gluten free diet, they usually jump on board quickly. that has been my experience. In fact, our non- celiac family members like the gluten-free food much more than the old, so they eat it too.

Good luck.

[Kibbie]

I think I would ask her if she would willingly feed them a little bit of arsenic everyday. Eating gluten if you are intolerant or have celiac is similar to eating a bit of poison daily. Even after my daughter spent weeks in the hospital and suffered from terrible pain for almost year, I still have to explain to friends and extended family that a little bit of gluten is dangerous to her.

You might also try making or buying some gluten free food to take to your children to show her that there are many options out there. I think the idea of cooking gluten free is daunting to many people who want to deny there might be an issue, but once they learn that it's not difficult to go on a gluten free diet, they usually jump on board quickly. that has been my experience. In fact, our non- celiac family members like the gluten-free food much more than the old, so they eat it too.

Good luck.

Here is the e-mail I sent out to my family and friends when my daughter was diagnosed at 18 months:

"Here is the technical mumbo-jumbo:

When anyone (even people without Celiac disease) eats gluten containing products it causes our bodies to produce an excess amount of zonulin. (A protein found in our small intestine that basically works as a doorman allowing the nutrients of our food to pass into the bloodstream) You heard me right.. EVERY person on earth produces too much zonulin when they eat gluten! Having too much zonulin opens so many ..doors.. that toxins (gluten fragments) get into our blood stream that normally wouldn't have been allowed in.

This is where my daughter's body acts differently than ours does. Her body sees these gluten fragments as invaders and it launches and attack against them.. the problem is her body also attacks itself (the autoimmune part of this Celiac) She produces antibodies ant react against normal, healthy tissue rather than the bad stuff.

Her body attacks the villi (the little finger things on our intestines that help absorb nutrients) on the lining of the small intestine causing them to flatten (really they are chopped down like a tree). If they have been chopped they are no longer able to absorb nutrients from her food. The damage always happens at the top of the intestine first.

Remember that her small intestine is about 3.5 times longer than she is (so about 10+ feet) So by the time she was showing symptoms and losing weight, her entire intestine had been damaged.

Anyhow the villi do repair themselves once you have switched to a gluten free diet. It takes 1-12 months for adults and with kids it..s a much faster recovery.

When my daughter was diagnosed less than one month after showing symptoms she was already malnourished, dehydrated, and anemic, things could have been much worse for her if we had not caught this and treated it right away!

Now you all know what Celiac disease is!"

I took a lot of it from the book Gluten Free Living for Dummies but if it helps use it

[Idontlikewheat]

Thank you, Debmom and Kibbie. These are very insightful replies, it is nice to have support from people like you who have experience.

However, the main problem with my ex-wife is that she doesn't want to hear anything from *me* ... she is still a bit angry because our marriage failed, and it is hard for her to hear anything I tell her.

This morning I called her and told her I feel she doesn't really understand what celiac disease is -- because if she did understand it, she wouldn't even think about whether it would be easy or difficult to feed our kids gluten-free ... she'd only want to know and she would be ready to do whatever it takes to allow them the chance to be healthy. And I told her that I feel it is somehow my job to help her understand this, to protect the children. I asked her what would be the best way to share this information with her, and she asked for articles ... not written by me.

Mostly, I'd like to send her something that will help her understand that celiac may be more than an *inconvenience* ...

Any ideas or links?

Many thanks!

[Tim-n-VA]

Any number of articles from the main page of this site would work. A relatively simple, easy to understand overview is at Open Original Shared Link Just click the link at the top of the page for "celiac disease".

[EliGee]

I advise you to read as many possible articles in this site and print the ones you find important!

Open Original Shared Link

Good luck, hope you can prove to her this is an important medical issue!

[debmom]

Do you think she would read this blog? I have learned so much from concerned parents here. Maybe she would be willing to read this and see how many people deal with children who have problems with gluten.

There is also an exciting discovery called the specific carbohydrate diet <scdiet.org> that addresses "curing" several intestinal issues, including celiac, that you might be interested in reading for yourself. We are thinking about starting the diet this summer to see how it improves our health, but the testimonials are very interesting.

[HouseKat]

Thank you, Debmom and Kibbie. These are very insightful replies, it is nice to have support from people like you who have experience.

However, the main problem with my ex-wife is that she doesn't want to hear anything from *me* ... she is still a bit angry because our marriage failed, and it is hard for her to hear anything I tell her.

This morning I called her and told her I feel she doesn't really understand what celiac disease is -- because if she did understand it, she wouldn't even think about whether it would be easy or difficult to feed our kids gluten-free ... she'd only want to know and she would be ready to do whatever it takes to allow them the chance to be healthy. And I told her that I feel it is somehow my job to help her understand this, to protect the children. I asked her what would be the best way to share this information with her, and she asked for articles ... not written by me.

Mostly, I'd like to send her something that will help her understand that celiac may be more than an *inconvenience* ...

Any ideas or links?

Many thanks!

I would start documenting your efforts to inform her about this. Write down dates and times of any conversations you have had about it that you can recall. Send her via certified mail or some other trackable way a letter outlining your concerns. This is in preparation for having a court order that she have the kids tested, if she continues to refuse.

As a person who suffered with celiac disease from at least the age of 12 to the age of 34, I implore you to make sure that they get tested as soon as possible. My growth was stunted, I suffered from depression and neurological issues, I was told that it was all in my head...my teen years were hell and my 20s weren't much better. I fear the long-term effects of 20+ years of damage. Don't let this happen to your kids.

Kate

[Kibbie]

Thank you, Debmom and Kibbie. These are very insightful replies, it is nice to have support from people like you who have experience.

However, the main problem with my ex-wife is that she doesn't want to hear anything from *me* ... she is still a bit angry because our marriage failed, and it is hard for her to hear anything I tell her.

This morning I called her and told her I feel she doesn't really understand what celiac disease is -- because if she did understand it, she wouldn't even think about whether it would be easy or difficult to feed our kids gluten-free ... she'd only want to know and she would be ready to do whatever it takes to allow them the chance to be healthy. And I told her that I feel it is somehow my job to help her understand this, to protect the children. I asked her what would be the best way to share this information with her, and she asked for articles ... not written by me.

Mostly, I'd like to send her something that will help her understand that celiac may be more than an *inconvenience* ...

Any ideas or links?

Many thanks!

Get the book Gluten free living for Dummies and send it to her. Also is there a local group in her area? I am a member of the Alamo Celiac here in Texas and for a $20 annual fee I get monthly newsletters with a ton of information and great info at that? Maybe that's the way to go.

I'd also suggest she meet with a GI doctor that knows a lot about Celiac and have them explain it all to her.

[Ahorsesoul]

I doubt anything you say or give your ex will help. You can not control what she thinks. Make an appointment with your children's doctors and talk directly to the doctors (without your ex along, children optional). Also when you see your kids talk to them about you going gluten free and how much better you feel. I suggest you back away from attempting to force you ex to come over to your side of the fence about gluten. It's hard enough to convince someone with celiac that they need to give up gluten.

Your heart is in the right place. You also need to be willing to increase child support or be willing to help buy gluten-free food if your kids go gluten free. It's expensive.

No matter what age your children are right now, you can convince them to go gluten free once they are out on their own. That is better than a lot of us who were past our prime when we finally found out we had a problem with gluten.

Good luck and keep us informed.

[Salax]

I feel for ya. Being a psychology major...I have a tendency to be looking at everything in that "way". I also tend to be very blunt. So not to anger or offend you, but to put this as honestly as I can...it would appear she is angry with you and unfortunately she is taking that anger out on your kids in a roundabout way. Almost punishing them, because you pissed her off. Don't know if thats true, but it could be...

Since Celiac appears to many as "not serious", I would recommend as some of other posters have. Take them to the doctor yourself and if you need to use the court systems. First I would try to talk to her, just her. Ask her are you willing to let the kids potentially have lifelong health issues and suffer because of something so small as eating different? Are you going to continue to punish our children for my mistakes? Etc...Because ultimately she is condemning your children to lifelong health problems.

As far as articles go, I would recommend looking them up online...look for scholarly articles through google. And buy her a couple books from doctors. It would probably make her feel better if they were doctor authored books.

Best of luck hun!

[sneezydiva]

If you have an actual celiac diagnosis from a GI doctor, I would have him talk to your ex-wife. After all, they recommend all immediate relatives get tested right? Don't under estimate the power of an authority figure telling your wife what she should do.

[CMG]

You might refer her to the National Institutes of Health Celiac Awareness Campaign. www.nih.gov, search celiac. It provides a link to educational materials. I also would recommend the book "Celiac Disease: A Hidden Epidemic" by Peter Green. Finally, I would agree with the others who recommend that you take your kids to the doctor yourself. I don't know how old they are, but if they are young and have celiac, development can be affected, as can education.

We put my daughter on a gluten free diet when she was 4. In a year and a half she jumped from 3rd percentile for height to 10th percentile. Her first two permanent teeth are just starting to come in and they are discolored and spotty - possibly a result of untreated celiac when the teeth were developing. She also has better attention/focus and is more social than she was when she didn't feel well all the time.

[mushroom]

From what you've said, sounds to me like she doesn't want to know whether or not they are celiac because she doesn't want the inconvenience of having to prepare gluten free food for them

I agree you should arrange to get their doctor involved to tell your ex they need to be tested, and if they are celiac she will be a bad mom if she doesn't accommodate their needs. That is the point where she will need to read all the articles and find out what will happen if she doesn't remove gluten from their diet. Right now she doesn't have the motivation because it's just a hypothetical.