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

I Hate Hospitals

shan

Recommended Posts

shan Contributor
shan
Posted

a little bit of backround... my 2 and 1/2 year old is a celiac and is doing absolutely great on the diet and knows, so far, what she should and shouldn't be eating...

now for the FUN!! my now 10 month old(this happened a month ago) was admitted to hospital for severe dehydration and they realised that he was malnourished... they forced me to stop nursing, saying it was my fault, stuffed him with a nasal gastric(NG) tube, did a bunch of blood tests, that all came back negative, including celiac, and sent us home with the tube.

after he had it in 3 and 1/2 weeks, i weighed him (that was this past tuesday) and i was so happy he'd put on 400 grams!!! On Thursday i was seeing a top pediatric gastro, and my son pulled out his tube. the prof said keep it out. He also said put him on, which he was on anyway, gluten, dairy and soya free diet. Today, sunday a.m., i weighed him and he'd lost 250 grams!!! i came home and i sat and cried my eyes out!!

then i called my prof, and he said come in and be admitted to hospital for invasive testing... Now i'm really scared!! i don't have a social circle that i can trust my celiac daughter with, my hubby can't take off for the next 5 weeks... my dd is gonna have to be with me at the hospital, every p.m. (my hubby will bring him in his lunch hour) and I HATE HOSPITALS.

I am scared :(

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

Celiac.com Sponsor (A8-M):


Nic Collaborator
Nic
Posted

I am so sorry that you are scared. and that your son is sick. I can't offer any advice except to just hang in there, this too will pass.

Nicole

Ursa Major Collaborator
Ursa Major
Posted

I wonder if your son is getting enough fat? Children need quite a lot of saturated fat for growth and to be healthy. I think it was a terrible idea to stop nursing (not your fault, of course). It would have been better for you to be on the diet he is on now, because gluten and dairy (and soy) will get to the baby through breast milk and can make an intolerant baby sick.

Why don't you try cooking his food with coconut oil (non-hydrogenated, cold pressed)?

I don't know why he has lost weight again, that must be scary. I am sorry you have to go through all this. I hope you can figure it all out, without your daughter getting sick as well.

Judyin Philly Enthusiast
Judyin Philly
Posted

i WISH I HAD SOME ANSWERS FOR YOU.

I can only offers prayers...maybe someone in your local celiac support group could help you out.

this is a scarey time and you need support now and local if possible.

you can go on the front of this forum and see if you can find a local support group

if your comfortable with posting where you live, others might know of friends there or of a link to a group.

good luck.

judy

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

How awful for you! :(

Do you feel comfortable posting what city/country you are in? Maybe there is a celiac group where you are that can set up some kind of support system for you--bring gluten-free meals to whoever is caring for your daughter (and to you, if you need them), provide helpful info, recommend celiac-savvy doctors,etc.

Does he have very big poops? Because that can make a big difference in weight, especially if you weigh him right after he's pooped a big one, especially if he poops infrequently, and he's probably pooping less frequently now that he is not nursing (oh, that must have been so hard for you!).

Two high-fat foods that I fed my babies were avocados and salmon (plain, broiled, and flaked--I think canned is okay, too, though, and easier--just make sure to pick out the bones).

Good luck, and keep us posted!

Nikki'smom Apprentice
Nikki'smom
Posted

I am so sorry you are going through this! I can only imagine how scared you are. Hang in there hopefully the drs can figure out why your little one lost so much weight so fast.

barbara123 Apprentice
barbara123
Posted

This has got to be a scary time for you and I wish you and your family the best. It is so scary when you have sick children. You and your family are in my prayers... :)

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

Celiac.com Sponsor (A8-M):


Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Shan, how are things going?

  • 2 weeks later...
shan Contributor
shan
Posted
  • Author

sorry all, been stuck in prison/hospital!!! haven't had access or laptop, which i am now on!! first things, the good news, he's finally put on weight! but before you get all excited for me, it's only coz of his ng tube :( the first few days we were here, the hospital did nothing, saying they were doing observations!! my prof walked out on me on day number 1 coz i asked for a gluten-free/df/sf and egg free diet!!! i raelised then it would be a long uphill battle... until i found a woman, the hospital fundraiser and public relations, and she pulled strings for me!! thankgoodness for connections!!

to cut a long story short, they have decided its coz he's tongtied that he refuses a bottle and any calorie laden food, too hard for him to digest, so on wednesday they are going to do that, and then on thursday theywill send me home hopefully (PG) and see me as an outpatient!! looking forward to seeing something other than the four walls of my hospital room!!

FYO my daughter came here everyday for the first week, and then she caught some type of stomach bug, and we decided to pay someone, to look after her, take her to the park, cook, and iron!! draining on the pocket, but a relief to know she is in good hands - and since she was cooking in my house where no gluten exists...

thanks for listening to my rambling... it's good to "talk"!!! :lol:

Nikki'smom Apprentice
Nikki'smom
Posted

Hang in there!

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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.