Surgery Concerns

[Sylvia]

I am a 53 year-old woman with diabetes since the age of 11. I have had celiac disease at least as long, but wasn't diagnosed until 3 1/2 years ago. I have Non-Responsive celiac disease and despite a very strict diet, have not grown back the villi. A recent Endoscopy showed at least one site of atrophy in the colon. Due to my diabetes my GI is hesitant to put me on predisone or any of the other immunosupresant drugs. I am relatively free of long term side affects from the Diabetes, and he is concerned ( as is my endrochrinologist) about the long term effects of something like predisone. I am now on the transplant list for a pancreas. This will eliminate the problem of diabetes, and the anti-rejection drugs should take care of the problem with the Non-responsive celiac disease. However, I am concerned about food while in the hospital (they will know about the celiac disease, but the intricacies of cross contamination control are a worry), also, they anticipate having to use some doner blood during the surgery. Am I at a risk (great or small) receiving blood and an organ from someone who has been eating gluten?? My pharmacist has checked the list of medications they will be using, and those are all Gluten free as long as the hospital uses brand names. Any response would be helpful. Waiting for a transplant is a lonley time. Thanks, Sylvia

[Lily]

Hi Sylvia,

I can understand the worry about cross contamination, I don't think anyone truly understand the pain it can cause unless they've been through it themselves and therefore aren't quite as careful as someone who is completely educated about it. Are there any support groups in your area? While in the hospital maybe you could drum up some support to bring you some meals? If you lived in my area I would be happy to help.

I hope your transplant comes soon and you are quick to recovery.

Blessings,

Lily

[gf4life]

Sylvia,

I'm not sure about how to answer your questions. They seem reasonable ones to ask, but I'm not sure anyone will have the answers. My heart goes out to you right now, and please know that you are now in my prayers.

I do have one suggestion about the food issue. If you know what hospital you will be at, please get together with their staff dietician before hand. If you don't know where you will be having the surgery and recovery, then try to get together with the dietician as soon as possible after the fact. Make sure the dietician knows exactly how strict the kitchen staff need to be in regards to making your food as safe as possible. You will heal faster if your body is not having to fight off gluten, and you will not want to compromise your new pancreas, either. You shouldn't have to worry about this at such a streesful time, but unfortunately it is just a way of life for us Celiacs.

I hope you have an easy time and a very quick recovery. Please let us know, if you can, when the transplant will take place.

God bless,

Mariann

[seeking-wholeness]

Sylvia,

I am just a layperson, not a trained medical professional, but here are my thoughts on the very salient issues you raised:

First of all, I agree that it would be wise to see about arranging for someone who understands the intricacies of the gluten-free diet to bring you meals while you are in the hospital. It's just a lot less risky that way, and the less stress you feel over the safety of your food, the more your body can concentrate on healing from the surgery. If there is no one who can bring you food, Mariann's suggestions are also excellent!

My feeling regarding blood transfusions is that the risk of being exposed to gluten and/or auto-antibodies is a relatively small concern, and certainly a lesser evil when compared to the risks of not receiving a necessary transfusion. Gluten itself should not be found in the bloodstream, although I suspect that traces MAY be present if the blood donor had a problem with a leaky gut. It's not something I would worry about, however. Also, my intuition tells me that problematic substances like auto-antibodies are more likely to be found in either whole blood or plasma, but less likely to be found in a bag of red blood cells or white blood cells. I would think that anti-rejection medications should take care of any trouble they try to cause, though. Your doctor might be able to give you further information about transfusions and which blood element(s) you will be receiving. And I doubt that the pancreas you receive would present an auto-antibody problem, since it is not an active part of the immune system like blood is.

I will be thinking of you as you await your transplant, and I, too, wish you a speedy and uneventful recovery!

[Lily]

Sylvia,

The American Red Cross will let you donate your own blood for your surgery, it's called Autologos (awww tall o gus). If you have a Red Cross close to you call them for details. You may also call 1-800-Give-Life to speak to their headquarters.

Just a thought.

Blessings,

Lily

[Guest Waldenflo]

Dear Sylvia,

Im a brand new member, looking for info on receiving blood transfusions. I truly hopet hat you've long-since had your surgery, and that all is well, without unpleasant complications! My wish is that this finds you in restored health.

Re: Celiac, I am NOT confirmed (negative blood test several years ago) but have responded markedly well to gluten-free diet for many years. Ive just had extensive back surgery and received two units of blood, not my own. I strongly encourage Celiac patients to donate their own blood, through Red Cross Special Donors Program. You may donate from 40 days before surgery through 10 days pre-op. If you are unable to donate, as I was, I have since found that Red Cross supplies "washed" blood for patients with confirmed auto- immune diagnoses. I have arthritis (osteo) Osteopenia, and several food intolerances. I believe myself to be gluten-dairy-yeast intolerant, and am doing homework on further diagnosis of Celiac, which I suspect. My Gastroenterologist himself HAS Celiac. I was (blood) tested about 4-5 years ago, after many years on a gluten free diet. I cound not tolerate the gluten loading, as my arthritis and GI symptoms jacked up to intolerable levels. I now will pursue other diagnostic procedures which do not depend on gluten loading.

Following my surgery (4-10-07) I am having a mild transfusion reaction, including a low grade fever (99.4-100.1) which Ive had for 6 weeks post-op, and Ive lost 18 pound, WHICH AT THIS POINT CAN ILL AFFORD TO LOOSE! I do not think confirmed Celiac patients or those who suspect they have Celiac , based on careful homework and rigorous gluten-free dietary management, should assume that it's safe to receive blood without careful discussion with a physician who's knowlegable about Celiac Disease and it's many complications. Desite the fever and weight loss, I am grateful that my back pain (from severe spinal stenosis, degenerative discs and arthritis) is virtually gone!

While in the hosp. I registered a week ahead that I was gluten and lactose intiolerant, and still had several wheat-dairy meals delivered. I asked to speak with a dietician, and she remedied the problem, on day 2, by sending staff to shop at a local health food store whose owner has Celiac Disease. Be sure to call or send a letter ahead to the hosp. dietician, detailing your special needs, including referring him/her to web sites if needed. I do hope this helps another member who's facing this difficult but manageable situation.

Many blessings to you,

Waldenflo

[EmmaQ]

I found our local hospital's ability to handle food prep properly deplorable. When I had my last hospital birth the meal brought was inedible, way too much salt. My mother called the manager and she stated that there was no way it had salt in it b/c they do not use salt. I told the woman that might be true, but this is too salty to even eat and I would like something else. My mother was fortunately there b/c this woman simply did not believe me. My mother said she tasted it too and it was too salty, nothing but salt. The manager decided to taste it and was appauled and appologized profusely. She brought me another meal, but at that point I had lost my appetite and was more than ready to go home.

I have found local and distant dieticians and nutrtitionist to be sorely misinformed about what is Gluten Free. I would not trust a hospital cafeteria or dietician to ensure my safety. I think this situation can be resolved with a visit to the hospital and talking to the dietician and cafeteria staff, usually you can tell right away if they have a clue or not. Or if they genuinely care.

One woman on a forum said the hospital brought her Rice Crispies and told her they were Gluten Free and they served them to all their gluten-free patients. She informed them that is not true, Malt is Barley Malt and that is Gluten. They still didn't believe her.

Each person's experience is going to be different. I personally have not heard of a good one, of course it is easier to complain that praise sometimes.

[happygirl]

note that this thread is over 3 years old.

I hope Sylvia is doing well.