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

*****sigh*****home From Hospital--temporarily

chrissy

Recommended Posts

chrissy Collaborator
chrissy
Posted

i've just gotten home tonight from 5 days in the hospital with tianna. kevin is staying with her right now, i will go back up on tuesday. i don't think she will be coming home for quite awhile. the doc said he is keeping her there until we have a "plan". her potassium was low, so she is on supplements and a heart monitor. her heart rate is pretty low because her body has gone into a conservation mode---it has been dropping even lower when she sleeps. the nurse came in and woke her up one night because of it being so low. she is pretty restricted. the bathroom door is locked, the water in the sink is turned off, and the garbage can has been removed from the room. she has to use a portable potty chair, and someone has to be in with her when she showers. she is not supposed to be walking around, so i have to take her in a wheelchair to get the outside sunshine that the doc wants her to get. she was originally being allowed to order her own meals, but she wasn't eating enough, so yesterday the doc had the dietician step in and now tianna's meals are just brought in to her. friday and sat she only ate 700 cals and 795 cals. the doc says he does not want to put a tube in her nose, but if she doesn't eat enough, he will. last night she ate a good dinner, pretended to have a stomach ache, and then threw up with me sitting right there-----even sitting with her i couldn't stop her. as soon as arrangements are made, she will be going to an eating disorder clinic. she just wants to die---i think she thought she could starve herself to death. the doc thinks that she has probably had the tendency for the eating disorder for awhile, but being diagnosed with celiac was just the last straw.

christine

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

Celiac.com Sponsor (A8-M):


Tony'sMom Rookie
Tony'sMom
Posted

I'm so sorry. I hope your daughter gets the help she needs and that she recovers soon. I will keep your family in my thoughts.

Guest nini
Guest nini
Posted

my heart just breaks for you and your family. I do hope that they are able to keep her diet gluten-free at the hospital... even hospital staff make mistakes with this diet...

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}

jaten Enthusiast
jaten
Posted

{{{{{{{{{{{{{{{HUG}}}}}}}}}}}}}}}}

jerseyangel Proficient
jerseyangel
Posted

Chrissy--I'm so sorry, I wish there was more I could say or do. Sending good thoughts, prayers and a hug your way.

wolfie Enthusiast
wolfie
Posted

I am so sorry. I will keep you and your family in my prayers.

I have suffered on & off with an eating disorder for years. It is a tough battle and will continue to be one for the rest of my life. I am glad that she is in a place where she can receive the help that she needs.

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

wonkabar Contributor
wonkabar
Posted

I'm so sorry to hear this. You and your family are in my thoughts. I can't even imagine how difficult this must be for you. The greatest gift we can give our kids is love; your daughter is very lucky to have you.

--Kristy

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

Celiac.com Sponsor (A8-M):


Canadian Karen Community Regular
Canadian Karen
Posted

Chrissy,

My heart goes out to you and I will keep you and your daughter in my thoughts and prayers. I can't imagine the feeling of helplessness watching your child go through this. At least she is exactly where she should be to get the best treatment. Are they giving her any kind of psyciatric treatment, specializing in eating disorders? I hope so......

{{{{{{{{{{{{{{{{{{{{{{{{{{{{ HUGS }}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

Karen

mouse Enthusiast
mouse
Posted

I am so very sorry that your daughter has this eating disorder. Like Karen said she is in the best place she can be. My prayers are with you, your daughter and your family. HUGS to all of you.

Becky6 Enthusiast
Becky6
Posted

I am so sorry!! Hugs!!!!

penguin Community Regular
penguin
Posted

I'm sorry, eating disorders are so hard. It makes family and friends feel so helpless.

I hope she improves soon. :)

jenvan Collaborator
jenvan
Posted

Chrissy-

Oh wow... I am so sorry. I am sure your heart must be breaking right now. Eating disorders are such a hard, and usually, lifelong battle. I am going to pray for healing, for a recovery, that her desires to harm herself would disappear. I had an eating disorder many years ago...and by the grace of God just snapped of it, I lost the desire. Rare story...but true. I hope she lets her guard down, listens to her family and counselors and loses the fear she is tangled up in... Prayers for you too...

RoseNNJ Apprentice
RoseNNJ
Posted

Sending Hugs and Prayers.

carriecraig Enthusiast
carriecraig
Posted

Chrissy, I'm so sorry you and your family are going through such a tough time right now. You're in my thoughts...

{{{{{{HUGS}}}}}}

Guhlia Rising Star
Guhlia
Posted

I fought with my own anorexia for three years. God bless you for being so strong for her. She will need it. I'll be praying that she's able to make a complete recovery soon.

2Boys4Me Enthusiast
2Boys4Me
Posted

(((((((((((((((((((((((((HUG)))))))))))))))))))))))))))

JenAnderson Rookie
JenAnderson
Posted

My thoughts and prayers are with you.

((((hug)))))

schuyler Apprentice
schuyler
Posted

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

I am so sorry about what you have been going through. I can't even imagine what it would be like to watch you're own child go through this. My thoughts and prayers are with you, Kevin, Tianna, Kassie, and the rest of your family.

evie Rookie
evie
Posted

Sending prayers for you and your family..you can not have too many @ such a time as now...We will all be thinking of you and yours. evie

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I'm so sorry--my thoughts and prayers are with you. I hope things improve.

prinsessa Contributor
prinsessa
Posted

((((((HUGS))))))) I'm sorry you daughter isn't doing well right now, but atleast she is getting the treatment she needs.

TCA Contributor
TCA
Posted

hugs and prayers from our family to each of you.

Tanya

JakeARoosMommy Newbie
JakeARoosMommy
Posted

Chrissy,

Lots of hugs to you! I am so sorry to hear about your daughter's condition. A church member of ours had a daughter that we helped to send off to a rehab center for eating disorders down in Arizona. It was costly, but it seems to be working. I pray that your daughter will recover soon.

ryebaby0 Enthusiast
ryebaby0
Posted

I am so sorry for your pain, and her's. We will keep you in our prayers. She has two things going for her: she's in a place where she is safe, and people will take care of her AND she has a fantastic mom who is on her side. Eating disorders and depression are so serious, and so long-term, but even the longest journey has to start somewhere, and sometime. Keep us up to date and let us know how she and you are doing. (You can create a website for her at caringbridge.com and save yourself the trauma of having to re-tell things over and over)

It's okay to worry. And it's okay to take a break and watch TV or sleep or read a book, too. Take care

Joanna

ravenwoodglass Mentor
ravenwoodglass
Posted

((((((((((Hugs))))))))))) and prayers. I hope things improve for you all soon.

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. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      @rei.b, I understand how frustrating starting a new way of eating can be. I tried all sorts of gluten-free processed foods and just kept feeling worse. My health didn't improve until I started the low histamine AIP diet. It makes a big difference. Gluten fits into opioid receptors in our bodies. So, removing gluten can cause withdrawal symptoms...
    2. captaincrab55
      - captaincrab55 replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Finding gluten free ingredients

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal. My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet. I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free...
    3. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and...
    4. knitty kitty
      - knitty kitty replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long? DGP IgG antibodies are produced in response to a partial gluten molecule. This is different than what tissue transglutaminase antibodies are produced in response to. TTg IgA antibodies are produced in the intestines in response to...
    5. rei.b
      - rei.b replied to rei.b's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      14

      High DGP-A with normal IGA

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,130
    • Most Online (within 30 mins)
      7,748
    Tony White
    Newest Member
    Tony White
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
×
×
  • 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.