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What Do You Do At The Hospital?
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15 posts in this topic

This is a huge fear of mine... When/if I have to have my brain surgery, if the hospital doesn't provide gluten free options, how will I eat while staying there? I saw in the prison post that a lot of people said that the hospitals where they are at didn't provide a gluten free option. Any suggestions as to what to do if they don't? Anyone else been in this dilemma?

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Before you worry for nothing in advance (a quality many of us have PhDs in) :D

Find out what hospital you are going to and meet with the staff dietician. They may be more enlightened than we think. (okay, I am being skeptically sarcastic here...)

or

Have someone you know bring you food?

or

Check with a local gluten-free cafe? For example:

The local gluten-free cafe here--the angel who owns it will make food and have it delivered to you.

I am sure others will chime in now.....wait for it......it's coming..............

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Do you have friends/family who are non-moronic and can bring you food that isn't a thousand kinds of contaminated?

If not, can you plan ahead and bring things with you? You'll probably be on clear liquids first. You could bring broths you know are safe in small containers from the store or in the boxes and they can refrigerate it. They should have a microwave on the surgery floor and a nurse can just microwave the broth for you. Bring jellos in little plastic single serve cups. (They usually make their own jello at the local hospitals here, I trust them not at all to even get that right.)

Thinking back to after I had my gallbladder out, after I was handling clear liquids they let me add pudding and milk. Milk came in cartons, any moron can bring you a carton of milk up and not open it. (Assuming you do milk.) And you could bring pudding cups from home too. Or if you have a friend/family you trust this is where you could have them bring a dairy sub if you need to made with whatever "milk" you use.

Eventually you'll be on "real" food. I never got that far in the hospital but you will since your surgery is pretty serious. You'll probably have to talk to either your doctor or plan time to go talk to the surgery floor staff ahead of time about what that food is. Plan what sorts of things you can bring. If you can't trust someone to prep food for you, you could always prep it and freeze it and have someone bring it when it is time.

I remember after my surgery I was STARVING!!! However much time they say you'll be there, plan for longer. However much you think you'll eat, plan for more. Better to be over-prepped than under. I haven't done this myself, as my surgery is when I was diagnosed but it is something I have thought on often as it is a super huge fear of mine.

Also, make sure they know ahead of time what brands of what meds are okay orally, or that they are only allowed to give you IV meds. My hospital charts all say that I am never to be given oral medication under any circumstances. With enough planning, everything should be as stress free as possible. (As if, right?)

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Honestly, we have a hospital here that thinks a diet for someone with high blood sugar is anything they want except dessert. I would have someone bring my food and pack some food. The last thing you need is diarrhea or migraines from a glutening.

Maybe you live in an area that is gluten aware? I thought you said Portland in another post? The hospital might be Ok there. I would check with them first and make sure your doctor writes gluten-free diet in as many places as he can. Then if you get any trouble, you can refer them to your doctor's orders.

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She said she's in Seattle. (where are your cheaters, Missy??) :P

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I take a crockpot, cup, spoon and ladle to the hospital for friends with homemade chicken soup. The first few days they can eat the broth and afterwards the chicken. Vegetables can be added when solid food can be eaten. The crockpot can stay plugged in -it's in the room so they can have a cup whenever they want. It is much healthier for them than microwaving, also.

Whatever you have prepared at home can be used at the crockpot later.

Hope that helps!

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She said she's in Seattle. (where are your cheaters, Missy??) :P

I was trying to remember. Too lazy to stop posting, go back and check, re- post or edit.

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I was trying to remember. Too lazy to stop posting, go back and check, re- post or edit.

Happens as we age, granny.

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I take a crockpot, cup, spoon and ladle to the hospital for friends with homemade chicken soup. The first few days they can eat the broth and afterwards the chicken. Vegetables can be added when solid food can be eaten. The crockpot can stay plugged in -it's in the room so they can have a cup whenever they want. It is much healthier for them than microwaving, also.

Whatever you have prepared at home can be used at the crockpot later.

Hope that helps!

Fantastic idea. The vegs and chicken can stay fresh enough for a few days like that?? Impressive.

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Fantastic idea. The vegs and chicken can stay fresh enough for a few days like that?? Impressive.

Meh, it's soup. What is the worst that will happpen? It will be soggy? I'm sure she'll totally care, drugged senseless on narcotics.

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My children are realizing that if I need a hospital stay they will need to bring me food. If I knew in advance I would freeze servings. I might try bringing my electric skillet if allowed. However, otherwise my children could cook or eat it at home and then keep it warm in my car oven. I am hoping I do not end up in the hospital.

Diana

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Fantastic idea. The vegs and chicken can stay fresh enough for a few days like that?? Impressive.

It stays fresh, I tell them just to keep it on warm overnight. They tell me everyone in the hospital comes by because it smells so good.

I have all size crockpots. If you are staying several days, I recommend that you take the large one. I usually carry it and supplies into the hospital in a box and leave the box there for them to carry it home and then I pick it up.

The broth is delicious. It is the basic SCD chicken soup recipe. whole chicken, onions, carrots, celery and parsley and filtered water.

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Meh, it's soup. What is the worst that will happpen? It will be soggy? I'm sure she'll totally care, drugged senseless on narcotics.

No, giraffe girl..........not because it will be soggy. :P

I have a "thing" about food sitting out for days ......, but if the poster Linda Lee says it's okay, I believe her.

That's why I asked.

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I got the little lunch crockpot. One reason was, if I had to go to the hospital, it would be easy for my family to bring me some Progresso gluten-free soup or some chicken broth from home in the morning. It would be hot for my lunch while they were at work or school.

I would definitely check with the hospital first. Many hospitals have this "super broth" that is the first food they give people after surgery. It tasted like beef broth but I would check the ingredients first. Most hospitals have yogurt, jello, pudding, milk, juice in sealed packages you could suplement with. There are also microwaves on all the floors. Some have fridges you can keep food in. They are behind the nurses desk, you have to ask a nurse to get it. These are all things to find out first, not while you are groggy and your family is worried about you.

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Thank you all for the great advise! I was seriously freaking out about it! You guys are my saviors! <3

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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