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thleensd

Er Doctors And Gluten Free Drug Lists

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So, went to the ER tonight with weird facial swelling ("idiopathic"), and some weird bad gluten-y symptoms that were not hang out at home sorts of feelings.

Funny moment: on check in with "triage", "....so, wait, you KNOW you have Celiac, and you KNOW that wheat affects you this way, then why did you eat it?" <_< Really? Yeah, nope. Not on purpose doc.

Good news: I had a doc that was *very* interested to hear that Celiac doesn't always equal diarrhea and shocked that it took so long to diagnose (and my story was Dx was relatively fast!) He was awesome about acknowledging the things he didn't know. YAY, points. Also joked about docs not knowing the answers then taking the credit when someone else figures it out.

Bad news: After I received my prescription, I said to the doc, "Is this a gluten free drug?" He said,

"That's a very good question". He found that ER screens aren't hooked up to the internet, so I jumped on my iphone (new best friend). Wasn't on glutenfreedrugs.com, so he had the nurse call the pharmacist. I received a long list of fillers, and looked most of them up while I was waiting for it to be filled. One came back as "usually made from potato, but sometimes from corn, wheat, or rice". Now, I would *think* that wheat would need to be claimed in a drug. Am I wrong? Actually, corn or potato for that matter! Anyway, the pharmacist pretty much told me to call the company and ask.

It seems to me that very few drugs would actually contain (at least wheat) gluten or allergy folks would be anaphylaxis-ing (like that word?) all over the place. But it seemed like quite a chore to get this info...for me, doc, his nurse, and the pharmacist. No one on site could give me a firm answer before dispensing the drug! Other than "look at the list".

Shouldn't it be easier? Discuss. =D

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So, went to the ER tonight with weird facial swelling ("idiopathic"), and some weird bad gluten-y symptoms that were not hang out at home sorts of feelings.

Funny moment: on check in with "triage", "....so, wait, you KNOW you have Celiac, and you KNOW that wheat affects you this way, then why did you eat it?" <_< Really? Yeah, nope. Not on purpose doc.

Good news: I had a doc that was *very* interested to hear that Celiac doesn't always equal diarrhea and shocked that it took so long to diagnose (and my story was Dx was relatively fast!) He was awesome about acknowledging the things he didn't know. YAY, points. Also joked about docs not knowing the answers then taking the credit when someone else figures it out.

Bad news: After I received my prescription, I said to the doc, "Is this a gluten free drug?" He said,

"That's a very good question". He found that ER screens aren't hooked up to the internet, so I jumped on my iphone (new best friend). Wasn't on glutenfreedrugs.com, so he had the nurse call the pharmacist. I received a long list of fillers, and looked most of them up while I was waiting for it to be filled. One came back as "usually made from potato, but sometimes from corn, wheat, or rice". Now, I would *think* that wheat would need to be claimed in a drug. Am I wrong? Actually, corn or potato for that matter! Anyway, the pharmacist pretty much told me to call the company and ask.

It seems to me that very few drugs would actually contain (at least wheat) gluten or allergy folks would be anaphylaxis-ing (like that word?) all over the place. But it seemed like quite a chore to get this info...for me, doc, his nurse, and the pharmacist. No one on site could give me a firm answer before dispensing the drug! Other than "look at the list".

Shouldn't it be easier? Discuss. =D

I have never understood why drugs should be exempt from the food labelling laws. These are things you are prescribed, reach for (whatever) when you are desperately in need. You are not sitting back and looking at the menu and saying, "Hmm, should I have that tonight? It could be delicious. Is it something I can/should eat?' You are in *need*, you don't have the time and/or energy to devote to that kind of c--p!! You need it now, not checking with the pharmacy and ultimately the manufacturer, maybe the next day, err, does this contain gluten?? and with the answer, maybe, maybe not. It's just not good enough. We oughta start a campaign!!

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Totally! "Can you wait a day or two to get sick so we can verify your drugs. Wait, actually, so you can verify them yourself? =D

Part 2 - went back today to get the name brand drug instead of the generic, and of course, they didn't have it. They said Tuesday. They asked if I had any allergies--someone has put on my chart:

Allergies: Bran

Reaction: Celiac Disease

heehhee...well, I guess that's close, right? Not so much!! So, then I had a conversation with the pharmacist on topical ointments that would be used over an open wound...and oh, near the mouth. That was interesting. THen I found out he was new there, so I got to help break him in. At least he was interested.

Once again, new doc and two pharmacists were perplexed that they didn't have a list of safe drugs.

I have never understood why drugs should be exempt from the food labelling laws. These are things you are prescribed, reach for (whatever) when you are desperately in need. You are not sitting back and looking at the menu and saying, "Hmm, should I have that tonight? It could be delicious. Is it something I can/should eat?' You are in *need*, you don't have the time and/or energy to devote to that kind of c--p!! You need it now, not checking with the pharmacy and ultimately the manufacturer, maybe the next day, err, does this contain gluten?? and with the answer, maybe, maybe not. It's just not good enough. We oughta start a campaign!!

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You may not want to have to deal with that cr*p but if you don't, you assume all the risks and the symptoms.

I had such a nightmarish time when admitted as an in-patient 2 years ago I've changed my advanced directive for care to read that I don't ever want to be hospitlized overnight, even if it's a life-threatening condition.

I had out-patient ligament reconstructive surgery that went very well. I was 2 days post-surgical, weight-bearing, doing PT and life was good. A PT assistant set the wrong parameters on the muscle stim AND placed a huge bag of ice on my leg without enough protection to my bare skin. The severe muscle contractions conbined with frostbite caused a DVT in my calf and by later that afternoon, I was in the ER. It's very likely that I received contaminated Heparin which made things 100x worse (currently under investigation). I wasn't diagnosed with gluten intolernace at the time but had a 2-page list of allergies and my file labeled in red.

The morons in both the ER and on the floor never bothered to cross reference any of the drugs for my known allergies. Even worse, the dietary dept. ignored the list as well and got really pissy when I wouldn't eat their food. The first meal I got sick and told BF to bring me safe food from home. You'd think vomiting, diarrhea, pruritic (itchy) red rash, solomnence, cognitive impairment and slurred speech would have sent off alarms but it didn't. I endured 5 days of hell and the only reason I got out on the 5th day is I demanded to file a complaint with a patient liason. I'm not sure how I managed that in such an altered state of mind....

It's slightly over 2 years later and I'm still recouperating. I figured out my own gluten intoerlance, my PCP accepted it and has since earmarked my charts but I NEVER want to risk being so miserable with such long-lasting consequences again.

I can't take statins so my PCP prescribed a cholesterol "scrubbing" drug (pre celiac). I took 1 does and couldn't leave the house/ toilet for a week! My chart had been labeled for years that I react to Sodium Laurel Sulfate and related detergents. THAT D*#NED DRUG used SLS as the "scrubber"! NOBODY BOTHERED TO CHECK! Not the clinic or the pharmacy I'd been using for years.

I've had too many of these terrible reactions to trust the clinics, hospitals, pharmacies or drug companies. I don't have a single OTC med in my house. I continue to take the 2 prescribed meds despite a reaction to the dyes as I can't get any without them. I've been successfully able to reduce the dosage to 1/10th of the dose I was on 2 years ago. I'll make another step down once I get back on supplements. I plan to get off meds entirely.

I'm allergic to every anitbiotic on the market. This is a big reason behind my studying Chinese Medicine, completely an MSTCM and practicing. There are viable ways to treat infections without resorting to drugs. I will add that there are risks with herbal medicine BUT if administered by a licensed knowledgeable practitioner, the risks are far less than drugs.

Now that I'm gluten-free, I haven't had a single cold. I've had sinus infections but that's related to mold spores, deviated septum and facial fractures that surgery didn't help. If I use a neti pot or my nasal saline with antimicrobial herbs, I can avoid many problems. It's when I get off track things get wonky.

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This is very typical, I am afraid. I have gotten the "that is a good question" too-- in hospitals, in the ER, at doctor's offices and even at pharmacies.

My local pharmacies are not hooked up to the internet, so they cannot access the list either and they must call. Sometimes this results in astonishing problems.

One example:

I was given an rx for a steroid pack (with the doses pre-measured in a little blister pack) for a celiac-related joint problem. The Walgreens could not confirm that it was gluten free so they attempted to do a "steroid conversion" to a different, safe format. This involved getting out huge books from under the counter and all three pharmacists got out their calculators and stood around arguing. Not a good sign.

They gave me the stuff, I took it.

The next morning I got a call and a very apologetic pharmacist told me they had accidentally given me a double dose. Unbelieveable.

That evening, I had an allergic reaction to the steroid. Unbelieveable.

If you look on this site, you will find a recent post about a petition that is going to the FDA to make all drugs gluten free. I signed it. I hope you all will sign it too. It is one of the final frontiers.

Lisa

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I have never understood why drugs should be exempt from the food labelling laws. These are things you are prescribed, reach for (whatever) when you are desperately in need. You are not sitting back and looking at the menu and saying, "Hmm, should I have that tonight? It could be delicious. Is it something I can/should eat?' You are in *need*, you don't have the time and/or energy to devote to that kind of c--p!! You need it now, not checking with the pharmacy and ultimately the manufacturer, maybe the next day, err, does this contain gluten?? and with the answer, maybe, maybe not. It's just not good enough. We oughta start a campaign!!

Celiacs v. the pharmaceutical lobbyists

Should be fun!

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If you look on this site, you will find a recent post about a petition that is going to the FDA to make all drugs gluten free. I signed it. I hope you all will sign it too. It is one of the final frontiers.

Lisa, do you have a link to that? My google search failed to come up with anything later than Jan 2007.

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I will sign any petition or add to any letter writing campaign to get drugs properly labeled. At my pharmacy I usually get "they don't give us enough info to know that."

When you're sick and not in your right mind, it's so hard to have to see to these problems yourself. And in addition, why should we? Aren't we supposed to be protected by honest labeling? After all, the companies make the stuff so they do know what goes into it, right? It's a simple matter of adding that info to their label. Just a few words would make all the difference.

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:blink:

Since you have been diagnosed have you found any medication that helps with the fatigue and brain fog

I am staying on the diet and after 9 months am still having more symptoms.

So, went to the ER tonight with weird facial swelling ("idiopathic"), and some weird bad gluten-y symptoms that were not hang out at home sorts of feelings.

Funny moment: on check in with "triage", "....so, wait, you KNOW you have Celiac, and you KNOW that wheat affects you this way, then why did you eat it?" <_< Really? Yeah, nope. Not on purpose doc.

Good news: I had a doc that was *very* interested to hear that Celiac doesn't always equal diarrhea and shocked that it took so long to diagnose (and my story was Dx was relatively fast!) He was awesome about acknowledging the things he didn't know. YAY, points. Also joked about docs not knowing the answers then taking the credit when someone else figures it out.

Bad news: After I received my prescription, I said to the doc, "Is this a gluten free drug?" He said,

"That's a very good question". He found that ER screens aren't hooked up to the internet, so I jumped on my iphone (new best friend). Wasn't on glutenfreedrugs.com, so he had the nurse call the pharmacist. I received a long list of fillers, and looked most of them up while I was waiting for it to be filled. One came back as "usually made from potato, but sometimes from corn, wheat, or rice". Now, I would *think* that wheat would need to be claimed in a drug. Am I wrong? Actually, corn or potato for that matter! Anyway, the pharmacist pretty much told me to call the company and ask.

It seems to me that very few drugs would actually contain (at least wheat) gluten or allergy folks would be anaphylaxis-ing (like that word?) all over the place. But it seemed like quite a chore to get this info...for me, doc, his nurse, and the pharmacist. No one on site could give me a firm answer before dispensing the drug! Other than "look at the list".

Shouldn't it be easier? Discuss. =D

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