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

Recommended Posts

bartfull Rising Star

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

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

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

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

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

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.

  • 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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

    2. - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      suggest gluten free food

    3. - knitty kitty replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      GI DX celiac despite neg serology and no biopsy

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      18

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,755
    • Most Online (within 30 mins)
      7,748

    vickie343
    Newest Member
    vickie343
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
    • olivia11
      Thanks I am mostly looking for everyday staples and easy meal ideas nothing too specialty if possible.
    • knitty kitty
      There are other Celiac genes. HLA DQ 2 and HLA DQ 8 show up in people from Northern European descent.   People of Mediterranean descent have HLA DQ 7.  People of Asian descent have HLA DQ 9.   There's other Indigenous populations that have other HLA genes that code for Celiac disease.   Are you still having symptoms?   What do you include in your diet?  Are you vegetarian? Are you taking any prescription medication?  Omeprazole?  Metformin?   Do you have anemia?  Thyroid problems? Are you taking any vitamins or herbal supplements?  
    • knitty kitty
      There are eight essential B vitamins.  They are all water soluble.  Any excess of B vitamins is easily excreted by the kidneys.   Thiamine is Vitamin B 1.  Thiamine is safe and nontoxic even in high doses.  Benfotiamine and TTFD are forms of Thiamine that the body can utilize very easily.   The form of Thiamine in the supplements you mentioned is Thiamine Mononitrate, a form that the body does not absorb well and does not utilize well.  Only about thirty percent of the amount on the label is actually absorbed in the small intestine.  Less than that can actually be used by the body.  Manufacturers add thiamine mononitrate to their products because it's cheap and shelf-stable.  Thiamine and other B vitamins break down when exposed to light and heat and over time.  Thiamine Mononitrate is a form that does not break down over time sitting on a shelf waiting for someone to buy them.  What makes Thiamine Mononitrate shelf stable makes it difficult for the body to turn into a useable form.  In fact, it takes more thiamine to turn it into a useable form.   Gastrointestinal Beriberi is a localized shortage of Thiamine in the gastrointestinal tract.  High carbohydrate meals can result in gastrointestinal symptoms of Gastric Beriberi.  Fiber is a type of carbohydrate.  So, high fiber/carbohydrate snacks could trigger Gastric Beriberi.   Since blood tests for Thiamine and other B vitamins are so inaccurate, the World Health Organization recommends trying Thiamine and looking for health improvement because it's safe and nontoxic.  
    • xxnonamexx
      Thanks very interesting I have to see if I should take these 2 vitamins along with my multi and super Vit B complex or if its too much or would hurt me. I don't have any other health issues but would love to see if this improves anything especially to feel stronger build muscle.
×
×
  • 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.