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missceliac2010

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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!

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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.

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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!

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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.

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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.

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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. :(

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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.

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    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
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    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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