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

Needing Help In Rehab

gilligan

By gilligan
in Coping with Celiac Disease

Recommended Posts

gilligan Enthusiast
gilligan
Posted

Hello!  I desperately need help.  The short of it is I broke my leg, had surgery, and must stay in a rehab facility for a few weeks.  My husband did quite a search trying to find one that could meet my dietary needs - gluten/lactose intolerance.  I am at the best available, but it's not going well.  We met with the chef and he assured me I would be safe.  Several mistakes have been made which they gladly fixed.  This weekend was awful - I was given Lactaid and cheese for breakfast (realized after I ate part of it) and my meals mostly consist of a chicken breast and fruit.  Tonight I had french fries and a dry salad.  I've lost so much weight that it's getting scary.  Yesterday I had the Big D (sorry! TMI ) 9 times.  I need at least 600 calories a meal to help me gain weight.  I'm subbing with Boost (totally gross!), peanut butter, rice cakes, raisins, nuts, etc.  My husband is bringing me extra meals as he can.  What are some suggestions for items to keep in my room that contain protein?  I know I'm being glutened as hard as I'm trying to avoid it.  I was just diagnosed with celiac in Aug. and all is fine at home minus the weight loss.  

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Can your hub or the kitchen make hard boiled eggs. You could keep them in a little cooler. I think you can even buy them in the egg section at some groceries. Nuts, nut butters, etc. there are shelf stable pepperonis, beef jerky and salamis that are gluten-free.

A lawyer that deals in malpractice might also be helpful. Someone to put the fear of God into them?

w8in4dave Community Regular
w8in4dave
Posted

OHH my goodness!! Poor you!! yea I'd be keeping like above some jerky, some fresh fruit! Some nuts maby some dried fruit.. All that will add calories. gluten-free fruit juices ... You can do it!! My goodness! Talk to every chef!! They have got to do it right!! Tell them to cook you a baked potato in the micro!! What the heck is wrong with them? You really cannot be the only one gluten-free there can you? Well ughh I guess you can :( but really they are supposed to accommodate every diet!! I'd be talking to someone thats for sure!! 

LauraTX Rising Star
LauraTX
Posted

If there is a patient advocate type of person, try to get in contact with them.  The facility has an obligation to meet your basic needs in the form of a balanced diet free of your allergen.  French fries and a plain salad are not a proper meal, and if that is what they are offering there is a problem and they need to consult with a dietitian that is familiar with celiac disease, at the least.  Don't be afraid to speak up to someone above who you are already speaking with.

cyclinglady Grand Master
cyclinglady
Posted

Cans of good salmon, sardines, good tuna.  Go Picnic gluten-free meals are yummy!  Soy or coconut yogurt, fruit, cold veggies, cereal.

 

Hotels bring in microwaves and frigs, can't the hospital?  If not, a big ice chest (they have ice!!!)   I'm sure they have a dietitian on staff and you need to meet with them to discuss your diet but to see if they have cross contamination procedures in place.  Let's face it.  Most of the food prep is done by teens or unskilled workers (I was one of them when I was in high school).  If that's the case, you'll need to have your hubby bring in all your food.  

 

But, I like Karen's suggestion.....an attorney!

  • 2 weeks later...
gilligan Enthusiast
gilligan
Posted
  • Author

Thanks to those who responded to my plea for help. Meals continued to worsen until a dietician was called in.  By worsen, I mean I was given whatever they were serving minus foods containing gluten/dairy.  That usually consisted of a chicken patty and carrot/celery sticks.   I was given Lactaid milk bc it was what they serve, and I was sick for 36 hrs. That's when an RN called in a dietician. I was just served a meal when the dietician walked in - a scrambled egg and fruit cocktail.  She was livid!  They replied with, "Well, she doesn't order much other than soymilk and hot water".  She told them it's because I'm scared to eat here, and I have my own tea bags and cereal to survive.  She's been here several times since, and yesterday she inservice the ENTIRE staff at each shift change.  She told them she wanted 600 calories on my plate at each meal.  She brought samples, explained the seriousness of celiac (she said they were shocked), took them through the kitchen explaining cross-contamination, and left them with a wealth of info to read including where to shop for me, acceptable/non-acceptable foods.  I complained about getting rice pasta twice/day because they discovered it was gluten free.  She nixed that by asking them to look at my tray and decide if that's what they would want twice a day!!  She is a powerhouse!  

 

This story has a happy ending so far.  Meals are improving, and I gained a pound this week.  So, I am up to 89 lbs. with 14 more to go.  I have a drawer full of nuts, peanut butter, apples, cereal, protein shakes (I can't get those Boost drinks down - I've tried!), raisins, and tuna.  I'm eating 6 meals per day.  My husband brings me bone broth, ham * beans, beef stew, and chili daily.  I feel like all I do is eat, eat, eat!

Adalaide Mentor
Adalaide
Posted

Wow! She really whipped them into shape. If only all dietitians were so up to speed on celiac we would live in a much better world.

 

I'm sure what you need to be doing is eat, eat eating so keep at it. Sounds like you're finally on the right track and will be getting in ship shape in no time.  :) And now your husband can stop spending so much time stressing out about you and more time simply caring. I'm sure it's all a load off his mind also. 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Wow!  You are so lucky you found a dietician that even knew what Celiac is.  There are so many bad ones out there.  They get no training in school about it.

bartfull Rising Star
bartfull
Posted

Tell that dietician she needs to write a book or paper that needs to be required reading for every health care facility in the country!

notme Experienced
notme
Posted

(I can't get those Boost drinks down - I've tried!)

me too, either - they are like a laxative to my body.  terrible.  if you aren't already, try some probiotics.  really helped me and i seem to be holding stready with my weight.  i would like to add another 10 lbs, so, working on that.   great to hear you had such a powerful advocate to fix your meal issues!!  people don't understand how important it is for us to EAT.  jerks.  <_<

 

(lolz - when i read the title to this thread i said  'no, no, no' but it's not the amy winehouse rehab ^_^ ) 

gilligan Enthusiast
gilligan
Posted
  • Author

me too, either - they are like a laxative to my body.  terrible.  if you aren't already, try some probiotics.  really helped me and i seem to be holding stready with my weight.  i would like to add another 10 lbs, so, working on that.   great to hear you had such a powerful advocate to fix your meal issues!!  people don't understand how important it is for us to EAT.  jerks.  <_<

 

(lolz - when i read the title to this thread i said  'no, no, no' but it's not the amy winehouse rehab ^_^ ) 

That's hilarious!  Thanks for the belly laugh!  I hope you gain that 10 lbs.  Good luck to you!  I have 14 lbs. to go, and I'll be at normal weight again.  At 5'1" and 88 lbs. I was really getting scared, and had no energy at all for rehab - physical rehab that is!  LOL!!

Gemini Experienced
Gemini
Posted

me too, either - they are like a laxative to my body.  terrible.  if you aren't already, try some probiotics.  really helped me and i seem to be holding stready with my weight.  i would like to add another 10 lbs, so, working on that.   great to hear you had such a powerful advocate to fix your meal issues!!  people don't understand how important it is for us to EAT.  jerks.  <_<

 

(lolz - when i read the title to this thread i said  'no, no, no' but it's not the amy winehouse rehab ^_^ ) 

.....Got to get back to rehab but I said No, No, No!!!!!!!  Love that Amy, Arlene!  ;)

Gemini Experienced
Gemini
Posted

That's hilarious!  Thanks for the belly laugh!  I hope you gain that 10 lbs.  Good luck to you!  I have 14 lbs. to go, and I'll be at normal weight again.  At 5'1" and 88 lbs. I was really getting scared, and had no energy at all for rehab - physical rehab that is!  LOL!!

It does take a while to gain the weight back so don't panic. I am 5' 4" tall and was down to 94 lbs and now weight in at 110.  I really don't want to gain much more because I am sick and tired of replacing clothes....most everyhting I owned had to go to Goodwill and I can't afford to keep doing that!  It was 6 months before I gained anything noticeable, though, so hang in there!  Hope you feel better 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. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    2. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
    3. Paulaannefthimiou
      - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,847
    • Most Online (within 30 mins)
      7,748
    L.Garcia24
    Newest Member
    L.Garcia24
    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

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.