Dying On A Feeding Tube

[ms-sillyak-screwed]

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[FaithInScienceToo]

I am copying and pasting my previous reply to you here.

Again, good luck to you - Gina

PS - If you have already been formally diagnosed as "Celiac" yourself, you must already have heard most of this info, I imagine...I took a quick look at your blog...seems you must have all the info you need about Celiac disease...not sure what anyone here can add about that for you...other than to wish you well.

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To 'prove' Celiac, you need AT LEAST a "Celiac blood panel"...a simple blood test.

It is usually required to have an endoscopy done if the test comes back positive, but if you can get the doc to tell you he will diagnose her as "celiac" with only a positive blood test BEFORE you get her tested, that would be best.

I guess you want to prove 'Celiac' to be sure her feeding tube nutrients are not poisoning her, and so that the end of her life, even in a brain-damaged state, will be less stressful on her body. I admire you for wanting to help her die in the easiest, most comfortable manner...She is very lucky to have you.

About epilepsy, I have very little knowledge of it, sorry.

Not sure why you need to 'prove that'...just trying to make sure she gets the meds she needs for that? If so, her doc should be able to get her checked for that...it might only entail a simple EEG test...(electroencephalogram)? I would think that her doc is now legally responsible to get her checked for it, if you and your family members have seen definite signs of it in her, and have told him so...

[debmidge]

Perhaps to allow you to sleep better at night over this, you should ask to see ingredient panel of the liquid nutrition they are giving her and maybe call the manufacturer. It could already be gluten-free and then just insist that they use that one.

I have to say, however, my father in law, we don't know if he had celiac disease as he died before my husband got a correct celiac disease diagnosis, but FIL had a feeding tube for the last 3 months of his life and at some point before death his body was not absorbing the liquid nutrition. It was passing thru him undigested (he was 80 years old too). Now we look back and don't know if it was due to undiagnosed celiac disease or is this just a part of dying that the intestines break down and no longer do their job correctly??

With people in their 80s+ it's hard to say because so much can stop working. For instance, her pancreas might be impaired and stopped producing enzymes that digest the food in the stomach. That could produce a celiac disease symptom and it is not celiac disease. The gall bladder could be involved as well.

If they are already taking her blood, insist on the anti body for celiac disease tests. I appears that she's not going to be around too much longer, so whatever they do, they should hop to it.

[ms-sillyak-screwed]

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[RiceGuy]

Sorry that your aunt has had such a tough life. I wish you all the best in your quest for answers and getting things corrected.

How can doctors get away with this???

Please tell me... how can we stop it?

I do know it goes on and on, and it is so frustrating when you know there are better ways than what the docs are doing.

When I was little, doctors would take my parents aside and tell them I was pretending to be sick to get attention. Nobody seemed willing to listen to me. I took a lot from my own family too, who basically remained in disbelief that there was anything wrong. Certainly the amount of medical knowledge is contantly increasing. Though much more progress would be seen if there wasn't such resistance from the medical industry. Thankfully, that is begining to change for celiac disease, but I think it's too little too late in many ways.

It does seem hopeless at times, and other times we gain hope and courage when good things happen. I guess that's part of what makes the human experience such a perplexing journey.

[ms-sillyak-screwed]

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