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What More Can I Do About My Mother.
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8 posts in this topic

It would be hard to describe the whole situation. I was diagnosed celiac last May by a genetic test. The same test was so positive that it was known both of my parents have the genes for it. I told them and all my extended family of my diagnosis. I also wrote to Mom's doctor to ask him to consider this diagnosis in my mother's care.

Dad said that Mom was just not up to a diet change then. She had begun some bizarre behaviours such as expecting company when there was none. She eventually got some psychotic drugs to try to help her brain function better. She became physically weak. The other day she couldn't rise from her kitchen chair for the entire day. Eventually, they had to call an ambulance to come get her.

The doctors are not telling what is wrong my Dad says. They aren't trying to explain why she is so weak suddenly? They may release her from the hospital today if she can walk. How does something like that mysteriously change?

What can I do? What can I do?

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My mom has had some of those things. She isn't Celiac. Do you live close enough to go to the hospital and be there when the doctor comes around? Sounds like your dad either isn't telling you anything, or he isn't understanding and asking questions.

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My mom has had some of those things. She isn't Celiac. Do you live close enough to go to the hospital and be there when the doctor comes around? Sounds like your dad either isn't telling you anything, or he isn't understanding and asking questions.

I live an hour and a half away and we are now short of cars in the family. I have given the doctor my name and phone number when I told his that I have celiac.

Did your Mom ever pull out of it? Mine has been so well and she is only 71. Dad is 81.

II don't think the doctor is allowed to discuss her healthcare with me. Mom and I have vastly different ways of looking at health care.

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I don't think the doctor is allowed to discuss her healthcare with me.

Even if he can not talk, he can listen.

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My mom has a lot of issues.

It sounds like your Dad doesn't want you involved. Sorry. there isn't much you can do unless you have evidence he is not caring for her appropriately. Then you could report him for elder abuse.

Do you have any siblings that know what is going on?

Just remember- just because someone has a gene or 2 that are associated with Celiac, it doesn't mean they will have Celiac. The gene has to be "turned on" to make Celiac.

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It might be worthwhile to check the drugs she is on for side affects. Some drugs can have very strong side affects.

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My mom has a lot of issues.

It sounds like your Dad doesn't want you involved. Sorry. there isn't much you can do unless you have evidence he is not caring for her appropriately. Then you could report him for elder abuse.

Do you have any siblings that know what is going on?

Just remember- just because someone has a gene or 2 that are associated with Celiac, it doesn't mean they will have Celiac. The gene has to be "turned on" to make Celiac.

My dad is a gem. My siblings are all involved. I just found out that the weakness was probably a side effect of a drug she went on two months back.

I will be sure to leave a note for the doctor if I have further questions.

Thanks,

Diana

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I think it is difficult for others to see what we have had to go through and do not want to admit that they might have a similiar problem. Both my parents and my brother have auto immune disorders which are associated with celiac diease. I too have suggested that they get tested just to be certain. Of course they will not. I really do hope your family get tested, but sometimes all we can do is be supportive.

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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. 
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    • 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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