Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Not Sure I Really Want An Answer

bartfull

By bartfull
in Related Issues & Disorders

Recommended Posts

bartfull Rising Star
bartfull
Posted

So my Mom had been diagnosed with Celiac, after years of being sick, in 1985. She had so much damage that she was told she must get a vitamin B12 shot once a month for the rest of her life.

Then, after many years she started showing signs of dementia. She refused to go to the doctor anymore because she was afraid of a possible Alzheimer's diagnosis. I tried and tried to get her to go. I made an appointment once and took her, but when she saw where we were, she refused to get out of the car. So I begged her doctor to make a housecall. He did, but she refused to let him in. (I was there. She threatened to call the cops if he walked in the door!)

It was getting to the point where I was afraid she was going to have to go into a nursing home, because I had to work and couldn't be there 24/7. She wouldn't allow anyone else in the house but me. She wasn't to the point where she was going to burn the house down or something yet, but I feared that time was approaching. I went up about 2 or 3 times a week to cook for her, take care of her bills, and clean the house.

Then one day I went up and she was SO sick. She had been fine four days earlier. But now she could barely walk and was visably jaundiced. I called the ambulance. She refused to get on it and they said we couldn't force her.

Next, I called the State Police. They sent an officer down and he interviewed her to see if she was "in her right mind", and determined she wasn't, so HE could force her to get on the ambulance.

I hope no one here ever has to go through what I did that day. My poor mother was kicking and screaming as they carried her out. She even bit the cop. I'll never get that picture out of my head.

She was diagnosed with acute lymphoblastic leukemia. The doctor said it was the type that "sneaks up on you and then pounces". They gave her three weeks to live.

I knew that vitamin B12 deficiancy can lead to dementia, and I had even heard that it can mimic leukemia, so I explained about the Celiac and how she hadn't been getting her shots. I'm afraid that because the doctor was a cancer specialist, he didn't know much about Celiac. He insisted the leukemia diagnosis was correct.

Mom died six days later.

Was I wrong not to fight harder? Should I have insisted that they give her some B12? Did Mom die unnecessarily? This has been eating at me for years, and I'm really not sure I want to know.

But fire away anyway. Let me know what you think.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Please don't blame yourself. There was nothing you could do over and above what you did. You loved her and took care of her the best you could. I don't think the form of leukemia she had would be something that could be a B12 deficiency. Im sorry for your loss.

(((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))

kareng Grand Master
kareng
Posted

You did what you could. Even if they had given her the B12, I don't think it would have made a difference. After all those years gluten-free, she may not have needed such massive doses anymore.

Its hard to see your parents like this. My hub had to deal with his mom for years with her mental illness. There is only so much you can do. They have to get really bad or unconcious before you can force them into a hospital. Its sad

domesticactivist Collaborator
domesticactivist
Posted

I'm so sorry for your loss. Please don't blame yourself. I know it's impossible not to play out all those "what ifs" in your head, but when they take over, please keep it in the corner of your mind that you did your best and that was all you could do. I don't think anyone could have done better than you did under the circumstances. Leukemia or not, her health was failing. This is not your fault.

bartfull Rising Star
bartfull
Posted
  • Author

My friend Jay always used to say, "Why put a question mark where God has put a period?" and I know he was right. Mom is gone and I can't bring her back. But when I read things like this, I'm pretty sure that I'm not out of line to wonder.

Open Original Shared Link

If nothing else, maybe someone else can prevent a wrong diagnosis.

cap6 Enthusiast
cap6
Posted

bartful~ my heart hurt for you. You did all you could do but even knowing that I know that you still hurt. My mom died in 2007 from what we 100% now believe was undiagnosed celiac complications. There is nothing I can do to change anything but still I live with the pain of wishing that I had been diagnosed sooner. Maybe I could have helped ease some of her pain.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.