The Medical Community Are Clueless

[anewsprue]

I had a knee arthroscopy yesterday at the hospital's outpatient clinic. All went well, then as I was in the waking up process a nurse comes in with my chart in her hand that had a big red label on it stating GLUTEN INTOLERANCE. It was time for me to start drinking and eating, she says to me, would you like some toast, a bagel or muffin? In my drug induced state I still went ballistic on her, I said didn't you see the front of my chart......NO GLUTEN? Oh, she says I was going to ask you what that was!!!!!!!!!!!!!!!!!!!!!!!!! God Help Me! This was not a rookie, this woman was in her 40's and had been a nurse for a while.

I educated her and ordered jello and 7-UP, then (excuse the language here) I got the ever lovin hell outta there. I know she wouldn't have intentionally hurt me and apologized, but I can't emphasize it enough folks, be careful out there!

And, always have a family member or friend with you who knows your condition when you have a procedure done. My daughter-in-law was with me and would have stopped her from glutening me if I couldn't have.

[celiac3270]

They are--some hospital nutritionists don't understand what gluten is... we always have to be alert about food

I went to Columbia Presbyterian for my second biopsy and my operation, but they have the largest celiac program there, so they were very good about the diet both times.

At least you're okay!

[nikki-uk]

This is a problem here in the uk as well unfortunately.So disheartening,hospital should be the one place where you should get 'safe' food.Still,you now know what to do if you ever go into hosp again(take your own supplies)

[mela14]

2 weeks ago I went to a new hospital for my monthly IGG infusions. I ususally spend about 4-5 hours doing the infusions and always bring my own snack. It's ususlly done in the drs office as he has the facility for it.

Well, I thought it was so nice of the nurses in the hospital to bring me a patient menu and ask what I wanted for breakfast and lunch. I told them I didn't want anything but a nurse came back with a muffin. I told her that I was gluten intolerant and refused it. she offered to get me some fruit which I thought was nice but I already had a banana with me. She then told me that my lunch would be a gluten free one as she called the nutritionist and requested one for me.

I thought that was soooooo nice. I didn't make it to lunch....they were late and i wasn't waiting around after my infusion. But....at my next infusion in 10 days I will make sure and double check everything even if they say it is gluten-free!!!!

You just have to always be on your guard.

[stef-the-kicking-cuty]

Still,you now know what to do if you ever go into hosp again(take your own supplies)

Oh, that's possible? Well, I know, in germany it would be. But my husband said, in an american hospital I can't take anything with me. And he b%$@#ed at me, I shouldn't be so defensive, they would know, what to do, blablabla... Can anybody tell me something positive here?

[pixiegirl]

I think we all need to remember that until recently, in the USA, this was thought to be a rare disease. Now we know its much more common then previously thought, but.... there are still so many undiagnosed people out there. When the doctors and nurses were trained, they were told this was rare and that they will hardly ever see it and that is their mind set.

My ex husband is a RN at the hospital... he has further training as a Physican's assistant.. and he told me they never, not once, covered Celiac in school, he had no idea about gluten problems until I found out I was celiac.

It would be nice if our medical community knew every thing but the bottom line is they don't. And most of them learn a lot of stuff in school, when they are constantly exhausted, studying 5 different subjects and when they are told, "this is rare and you probably won't ever see it... it certainly gets filed away.

I'm not defending the medical community... I'm just trying to deal with it the way it is, I try to educate. When I found out I had Celiac, the internist I had then fought me tooth and nail, he insisted I do not have celiac, despite the only time my runs had stopped in over 11 years was on a gluten-free diet. I feel really lucky to have found a new doctor that went to medical school in Spain (she is spanish). She knows what celiac is and what the implications for it are.

But when it comes to our medical community we have to advocate for ourselves.

Susan

[cdford]

I have the nurses double check every med for me after I explain how sensitive I am. I had a positive result at my last hospital visit...the nutritionist came and sat down in my room and discussed what I could and could not eat off the menu. They had to order meals from another local hospital, but they did it. They even made adjustments and sent extra on my plate for my daughter since none of the readily available items in the cafeteria were gluten-free. Things are getting better here.

Of special note: I carry a card or note with me at all times with emergency instructions for handling my children, caring for me in case of emergency medical requirements, emergency contacts, etc. It has saved me from real problems more than once.

[mela14]

donna,

what does the card or note say??? I think I would like to make one up for my wallet to...byt not sure how to word it.

thanks,

[SharonF]

I think a lot of people (myself included) want to believe that doctors and the medical community are all infallible, when of course they aren't--they are people, just like us.

Thanks for the reminder that we need to look out for ourselves. I wonder what I would have eaten, post-birthing my first baby after the cafeteria closed, had I known I was gluten intolerant then? (The only thing they could offer me was a ham sandwich.)

[judy05]

In defense of nurses, I am an RN who just retired after #30+ years. The only time I heard of Celiac was in nursing school. They taught us that it was a very rare disease which occurred in children with distended belly and severe diarrhea. I agree that the medical doctors and nurses need more education. Most of my work was in the psychiatric field and we seldom had patients on special diets. Just because someone is a nurse you can't expect them to know everything. My advice is never assume that medical people know all that we know, be specific whenever you are admitted, be sure they understand what gluten free foods and medicines are. My own physician doesn't understand this disease. I tried to ask him to screen his patients, he said if any of his patients develop GI problems he automatically refers them to a GI doc. I tried to explain that Celiacs often have symptoms other than GI issues but he didn't seem interested. Needless to say I am looking for a new primary.

[gf4life]

But my husband said, in an american hospital I can't take anything with me.

I wonder what I would have eaten, post-birthing my first baby after the cafeteria closed, had I known I was gluten intolerant then? (The only thing they could offer me was a ham sandwich.)

I recently spent two days in the hospital having surgery and I was encouraged by my doctor and the nursing staff to bring my own gluten-free snacks/food supplements. I was so glad that I did, since when I came out of the anesthesia I was very sick to my stomach. By the time I stoped throwing up the cafeteria was closed. They keep frozen meals for the hungry patients after hours, but they are the left-overs from the cafeteria and therefor not labels with ingredients. The nurses and I did not feel comfortable with me eating this. I survived the night on rice protein bars, dried fruit , fruit leather and juice! The gluten-free meals that I received the next day from the cafeteria were better than the diabetic meal the lady in the next bed received, so I was very grateful. The kitchen staff were very knowledgable about the gluten-free diet and I did not get glutened while I was there. Not all of the nurses were aware of gluten (or gluten intolerance) but were willing to learn about it.

[luvs2eat]

Something similar happened to me in the short procedure unit. After a shoulder manipulation (for a frozen shoulder), I woke up in considerable pain. Before they could give me a pill for the pain, they insisted I have some food on my stomach. We started going thru their list, "No, I can't have toast, No I can't have crackers... or cereal... or a cookie." Just as I was about to start crying... my friend walked in and handed me a big fat Snickers bar!! Ha ha... It was the best thing I've ever tasted!!

Next time (hoping there is NO next time!!!) I'll be sure to bring my own snack!!

[anewsprue]

Next time I have any medical procedures I am going to print off some info from the internet and take it with me. I forget others that don't have this disease don't have it on their minds 24/7 like I do. But...it's time they have a heads up and learn about it.

[stef-the-kicking-cuty]

Well, if you have a surgery, then you know this couple of days before you go, right? So you could get some information. Or maybe inform the hospital staff about this. But what, if you have an accident? An imergency and you want your hubby or a relative to bring something in, because not in all hospitals they offer glutenfree meals...

[Guest gfinnebraska]

When I had surgery a year ago, the nursing staff was clueless as to what gluten was!!! They kept offering me soup, sandwich, crackers, etc. They thought I wasn't eating enough, and kept offering me ALL the wrong things. I had to stay on top of it... good thing I could! The problem is, the general public as a whole does not know what gluten is!! I did prior to celiac disease because I made all my own bread and knew the ingredients, etc. NOT very many people out there do. So, not to just pick on nurses and doctors... ignorance abounds in the public as a whole!!

[amyfeistel]

Last June I became sick with a sinus infection and required antibiotics. The dr. prescribed penicillin to which I had a reaction. So, he called in a "Z-pack" (zithromax). I questioned the pharmacist on the z-pack, asking for her to specifically check for gluten-containing starches. I even named them for her and gave her a list to cross-check. She insisted the meds were gluten-free.

Three days later, I'm sick with non-stop diahrrea. I was so weak I could barely walk. I went back to the pharmacy. I demanded to see the drug insert. There, the 3rd ingredient listed was "starch" -- unspecified and, as it turns out, made from wheat. I was so angry!!

I quietly explained to the pharmacist the exact nature of celiac disease and the impact ingesting gluten can have on my well-being. I threatened to file a complaint against her license since she lied to me (she couldn't have read the insert!) I also spoke with the pharmacy manager and made sure they understood a law suit would be on them if she ever violated the warning on my records and gave me contraindicated drugs again.

Needless to say, they've been very careful since.

[KaitiUSA]

Zithromax? That is gluten free...just confirmed it with the Delphi forum updated list of what is safe.

I was on that for like a week last year and the manufacturer confirmed it was gluten free then as well.

[tarnalberry]

Yep, Z-packs are gluten-free. (the starch isn't wheat whenever I've checked). I've got to take that stuff... not infrequently. ;-) (stupid respiratory infections... grumble.)

[Guest nini]

Zithromax is about the only antibiotic I CAN take. Although one of the side effects listed on the insert is potentially severe diarreah, not from gluten but from the type and level of antibiotic. I also verified this with the company that it was gluten free.

[tarnalberry]

Yep, most antibiotics run that risk - I get a bit of loose stools, but nothing too bad. Biaxin, on the other hand, I believe is also gluten-free but won't let me keep anything in my stomach. It's awful for me.

[gf4life]

Zithromax is one of the only antibiotics that my 2nd son can take. So I checked on it as soon as he started the gluten-free diet. It is gluten free.

I do get a lot of GI problems from antibiotics, even the gluten-free ones. The stronger the antibiotic the worse the GI problems. I have had a couple of bad infections in the last 6 months and had to take some really strong antibiotics. I had horrible intestinal pain that lasted for more than 3 weeks. They also made me feel extremely ill while I was taking them. I could have switched to a different antibiotic, but the alternatives do the same to me, so I had to just deal with it. My point is that it isn't always gluten in the medication that can make you ill, sometimes it is just the normal side effects of the drug.

Can I ask, who told you the starch in the Zithromax was made from wheat?

God bless,

Mariann

[skbird]

Back to RNs - a good friend is graduating at the end of the month with his BS in nursing and he has been taught that only children have/get Celiac's. He's a very easy to talk with person so I'm thinking of sitting down with him and giving him an education in gluten-intolerance. The nursing school in my town is a top-rated school and I know this friend of mine is a top student, as well, so they simply aren't doing enough to educate about gluten and Celiac's.

I was pretty discouraged about learning this when I talked with him initially but hope that I can help to educate him on GI so he can maybe help even just one person. Plus, he will be working at my local hospital so maybe, if I am ever there in an emergency, he can help look out for me on this.

It would be wonderful if GI/Celiac's were better understood but I have also heard on diabetes/hypoglycemia sites how often hospitals have problems with those diets as well, and they are much better known. So this really doesn't surprise me (though it does dismay me!!!)

Stephanie

[luvs2eat]

I think I'm going to make up a card that says:

No gluten means don't give me anything that contains any kind of flour or food starch.

That would be a huge help. Ya can't just say wheat... cause people offer you WHITE bread... it's not wheat bread. Yikes!

[cdford]

Here are some samples from documents I keep on my system. I keep a standard gluten free restaurant card in my purse. I also keep a sheet of medical information that has the following information:

**REQUIRES GLUTEN FREE MEDICATIONS AND FOODS** is centered and clearly visible at the top of the sheet

-My name and date of birth

-Name and phone number of my insurance company

-A short summary of my medical history including the celiac disease/DH, fibromyalgia, neuropathy, hypothyroidism, neuropathy, etc. I make it clear that I sometimes lose the ability to communicate so that I am not mistaken for someone who has had a stroke or entered a vegetative state or something.

- Emergency contacts with their relationship to me and their contact information. I have my husband's work and cell numbers as well as my son's and parents'.

-Allergy list including medications and the celiac disease grains

-List of current medications and the name of the doctor who prescribed them

-List of physicians who treat me with their addresses and contact information

-The phone number for my local pharmacy

One item you do not want to have on this sheet or anywhere in your purse is your SSN. If your purse if ever stolen, your identity can also be stolen more easily if this info is readily available.

I keep a similar but more detailed list on my computer and just update it regularly and print it out each time I go to the doctor. This one does not contain the insurance and contact info but has more detailed current symptoms. I makes it much easier than having to remember every med and symptom change when I get to the doctor's office. Also, this means that every doctor has the same information in the same format.

For those of you who are parents, here is the wording of the notarized authorization letter I keep on me at all times for the kids.

In case of an emergency, my minor children Jennifer or Joseph Ford may be left in the care of any of the following persons until I am able to care for them again. These are in no order of preference.

(Then there is a table with several contacts so that surely they can find one of them. An example is below.)

Person(s) Phone Number Relationship to children

Charles Ford (770) 852-6815 Father

Joshua Ford (770) 377-8298 Brother

You get the picture.

Hope this helps.