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missceliac2010

Hospitals

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Hello Friends,

I just found out that my youngest son, Tyler, has to have his 3rd open heart surgery. He has a severe heart condition and will require another new pulmonary heart valve placed in 2-3 weeks. His old valve, placed in 2006, has totally failed...

My question is related to the hospital diet. Has anyone had experience with requesting a gluten free diet while hospitalized? Tyler is not "formally diagnosed", as I chose to not put him through any invasive testing, and he is responding to the diet so well, I do not find it necessary. I know most hospitals have a dietitian... Do I simply meet with him/her and explain his gluten allergy?

Any suggestions/exp are welcome! Thanks!


Heather C.

July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

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Hello Friends,

I just found out that my youngest son, Tyler, has to have his 3rd open heart surgery. He has a severe heart condition and will require another new pulmonary heart valve placed in 2-3 weeks. His old valve, placed in 2006, has totally failed...

My question is related to the hospital diet. Has anyone had experience with requesting a gluten free diet while hospitalized? Tyler is not "formally diagnosed", as I chose to not put him through any invasive testing, and he is responding to the diet so well, I do not find it necessary. I know most hospitals have a dietitian... Do I simply meet with him/her and explain his gluten allergy?

Any suggestions/exp are welcome! Thanks!

If you have any requests about your child's diet, all you have to do is talk to the Registered Dietitian. That is what they are they for especially for children because this helps them recover. My daughter who is now 23 has had over 25 surgeries and the nutrition staff has always been very accommodating (even though she does not have gluten problem). I wish you luck and send you prayers. I know how tough it is to have a child that has to endure so many surgeries/procedures.

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I am sorry you are all having to go through this. Yes do speak with the dietian but also be aware that some hospitals are better than others at getting the diet right. If you feel at all uncomfortable talk to your doctor about getting permission to bring him food from home.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I am sorry you are all having to go through this. Yes do speak with the dietian but also be aware that some hospitals are better than others at getting the diet right. If you feel at all uncomfortable talk to your doctor about getting permission to bring him food from home.

Thanks SeaShell! Sorry to hear about your child, and thanks for the kind words about my boy. He's a trooper, and he'll get through it fine. It's mommy having mental breakdown that I'm afraid of...haha....j/k.

And thanks Raven! Good idea. I had already planned on bringing myself a lot of snacks, bread, fruit, etc, so I can avoid CC while bedside for a week with him. The last thing he needs is Mom being sick! Glad to hear you had good luck with the hospital dietitian! That gives me great hope!


Heather C.

July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

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[believe me - I've had my share of Mental Breaks during her treatments. It is hard to watch your child go through so much. But they seem to come out better and stronger. My daughter is now in school to become an occupational therapist due to her disabilities. All of her doctors are encouraging her! Might just take her a bit longer than normal. Your son sounds like he is strong too. As for taking your own food, I do that everytime I'm in the hospital with her (I'm gluten/caesin intolerant).

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Sorry to put a damper on this but a lot of people on here have not had good luck with gluten-free food at a hospital. In my case, my mother was just in a "good" hospital and the diabetic diet was full of carbs. You may need to be ready to provide all his food. Also, talk to the floor nurses, they may have access to a microwave and fridge. I would talk to the doctor about what to feed him when in the recovery so you can be prepared. If broth and jello the first day, have some ready. I'm sorry you and he have to go through this again.


 

 

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And thanks Raven! Good idea. I had already planned on bringing myself a lot of snacks, bread, fruit, etc, so I can avoid CC while bedside for a week with him. The last thing he needs is Mom being sick! Glad to hear you had good luck with the hospital dietitian! That gives me great hope!

I haven't had any actual experience with eating hospital food as a patient. I did work in nutritional services a long time ago and they seemed to be knowledgeable about CC issues. I came there from a restaurant that catered to folks with food allergies and intolerances so they had me handle some of the 'special' meals. There are quite a few people who have had horrible experiences in the hospital so I would err on the side of caution.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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There are quite a few people who have had horrible experiences in the hospital so I would err on the side of caution.

I am sorry to tell you that I was one of those. The hospital I was in had special diets for everything except celiac, about which they had not a clue. Even though they sent the dietitian up to talk to me, if I had relied on them to keep me safe I would have been both glutened and soyed every day. Other hospitals I know do a better job than that, but the trust is gone. Luckily I had my husband there and a Whole Foods just two miles away :)

If he is having such serious surgery the last thing he needs is gluten and I would definitely err on the side of caution, as ravenwoodglass advises.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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I'm afraid that most of what I've heard about a hospital's ability to adhere to a gluten-free diet has been negative as well. It seems like it very much depends on the hospital. I have been to a couple that were very aware and careful with my health. But I've also been to a couple where I was given beverages and medication that, when asked if it was gluten free, no one could say because they never bothered to check, even though I had both celiac disease AND a gluten allergy listed on my chart. Being prepared ahead of time seems like a good idea, just in case.

And in that spirit? I would really suggest that you find out what medications your son will need post-surgery and make sure they have gluten-free versions on-hand ahead of time.

I had surgery last month, my first on a gluten-free diet. I needed pain pills and muscle relaxants. The doc was very good about checking out my pills very carefully to make sure they were gluten free. But the pharmacy just filled the prescription with generic versions without ever checking their gluten status. They, and three other pharmacy companies in the city, tell me that the drug company doesn't give out that information, usually, and they'll have to call the company to check gluten-free status.

Since it was the evening, the companies were all closed, so we had to wait until the next day to find out if we were getting gluten-free drugs. Turns out that no, the drugs had gluten. ALL the drugs we needed, from all the pharmacy companies in the city we contacted, had gluten or had 'unknown gluten status.' And it's not a small place - nearly a million people! They had to order the brand name of the drug we needed, just to get one that we knew for certain was gluten free. And since it was a weekend, it took three more days to do it.

It was really a nightmare, and one of the first things in my head was: what if this were my child having to go through this? I swore I would never let my little one have surgery without having every drug she needed, available ahead of time. As more and more pharmacies are carrying generic drugs over brand name ones, I have a feeling that this issue is going to get more and more prevalent. :(


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I had surgery last month, my first on a gluten-free diet. I needed pain pills and muscle relaxants. The doc was very good about checking out my pills very carefully to make sure they were gluten free. But the pharmacy just filled the prescription with generic versions without ever checking their gluten status.

When a doctor goes to the trouble to check themselves on the gluten statis of a drug they are prescribing make sure to ask the doctor to note not only the drug but also the maker on the script. The doctor also needs to write DAW (dispense as written) into the special area on the script for it. The pharmacey can't substitute another brand or generic for your drug if the doctor does that.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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