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Finally!


Niteyx13

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Niteyx13 Explorer

As some of you know I am undiagnosed. I have been on the gluten-free diet for 2 months now, and have felt quite a bit better. I have learned to eat on it very well, etc...

I went to the doctor today. I had planned on seeing my old one (because I needed a thyroid blood check), and it turned out he has finished his internship, or whatever, and is now gone (this is the one that was always giving me IBS meds). I told this new doctor what I was doing with the diet, and about my family link, and all the reasons I believe I have celiac disease. He listened very well, and then just said to stay on the diet if it makes me feel better.

The problem is that I share joint custody, and if my son has it the only way his dad will follow a diet for him is if there is proof. He already said he won't do anything at all to test him unless I have proof of having it . I explained all this to the doctor. He understood. Sooooo...I am going back on gluten for awhile. BUT, I actually left the doctor's office with the lab slip for the blood test. He told me to get it in a month or so. I am excited about this, because I am one of those people that likes to know things for sure. Now I just have to hope that I eat gluten long enough, and that the antibodies show, etc.

I wanted to share this with everyone that has frustrations with doctors. I think this new guy happened along for a reason (it's totally a "God thing"). So, no one give up if you are undiagnosed like me, and you have problems with doctors.

Deanna


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Alexolua Explorer

Deanna, do you know about enterolab?

They can test you for the disease, when you've been gluten free for awhile. They can even do a genetic test. That could give you your proof. Though, from the sound of it, your ex-husband may not be willing to accept that, since you didn't go to a doctor's office to get tested. Just a guess.

The testing is done by ordering, and it's mailed to you, you give a stool sample, and mail it back. Your results are then emailed to you.

It can be found at enterolab.com. You can even email them, I got a response back the next day.. don't know if that's normal though, lol.

Go for the blood testing if you feel it's best, but thought this might be helpful to know, if going back on gluten is too painful for ya.

Good luck! =)

flagbabyds Collaborator

You're lucky you got to see a doctor as good as that, that sucks about your son though

Niteyx13 Explorer

I know about Entrolab. I am afraid that without a doctor's diagnosis my ex- husband would not accept it. I have to pray that he does even with a diagnosis. He already told me he doesn't want "our son's life to have limitations". Which is really stupid if you think about it, because if he is a celiac and he doesn't eat right his life will have limitations anyway - if he feels as sick as I have all the time. We'll see what happens with all of it, at least now I have a open door to start the process. Thanks for your responses. :)

Deanna

Alexolua Explorer

You're welcome, and yeah, I figured he wouldn't accept them. But thought I'd mention it incase you didn't know. =)

Hmm.. hopefully you can get positively tested then! Hopefully this doctor can help get you diagnosed, then if you really need too, you could get full custody of your son? No offense.. but sounds like your ex is a moron.. and may not even have your son follow the diet if he has too.. which could be considered child abuse?

I like to ramble, sorry.. but hoping everything works out for ya!

Niteyx13 Explorer

It would be awesome to have full custody of my son. Yes, my ex is a moron, but unfortunately the state of Arizona is a state big on joint custody, and being a moron doesn't disqualify you as a fit parent. It is a thought, though, if he is diagnosed...lol. His dad will have to learn A LOT to take care of him the correct way with the disease. We'll just have to wait and see what comes about. :)

Deanna

  • 6 months later...
3855inverness Newbie

My husand and I too are separated, and share joint cutody of our seven year old son. My son was diagnosed in the fall of 2003 when he had a low positive on a blood test. He missed a total of 45 days of school because of abdominal pain and diarrhea then. My husand now wants him tested futher because he believes he does not have celiac disease. We have decided to have the gene test done because this will definitively determine whether or not he may the disease. If he tests positive for the genes, we will then do a gluten challenge.

I was diagnosed with celiac disease - but I trully just believe that my husband doesn't want my son to be restricted from eating pizza with his friends. I, on the other hand, just want him to be well.

MF

Fairfax, VA


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  • 2 weeks later...
lcmcafee2 Newbie

If/when your blood work comes back and you still feel that your son should be tested or on a special diet perhaps Children Services could intervene for you? I am on the Community Board locally and know they would help if the situation were in this area. They might be able to help educate the father about how improtant the diet is. Maybe hearing from an agency will give him the kick start he needs to be open to the idea! There is such a stigma against Children Services and folks tend to avoid any contact with them. A lot of states are working on improving the public image of them. YOUR SON's health is a priority! (when you get your results back) you go girl!

Good luck with your tests and keep us posted OK?

Laura

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