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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dr. And Pharmacy Insanity
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Ok, so Wednesday I had to go see a Dr. at an urgent care facility( ER was way to busy, and seemed a bit much for the injury I had) over a sprained ankle and muscles in my leg.  While trying to  request new paper work, the  girl behind the counter states "Oh, just tell the nurse". Strike one, in my book if a patient needs to update their info you should  freaking listen. The last time I was at this location I was not diagnosed yet, and felt it was important they should have this documented. 

Strike two happens when I tell the nurse,who was very nice, you could still see the doesn't get it look in their eyes, so I wound up  have to speak to the Dr.  Again this is at an urgent care facility but here was to me the  near finalie The Dr. states He has no idea what gluten is, but would tell the pharmacy to ensure my meds was handled to be gluten free.

I am so frustrated, I do not want to take anything that could be CC'd like most of us would not want to have to contend with on top of the  leg issue I had. So then I look down at my supposedly updated discharge papers, no record listed of  celiac's or request for gluten free  items to be used at the pharmacy. Again the meds given was not seriously needed  like an antibiotic or anything but the nonchalant behavior really  disturbed me. Has anyone else experienced this bull in medical facilities? I am  outraged, that people have to pay  so much money to clueless individuals. Strike three was the Walmart by my house,that is how I learned that the pharmacist himself did not know what it meant to make sure my meds had not came in contact with anything potentially  exposed to gluten.  I honestly can't recall having been so upset at the lack of not knowing from people who of all should know bloody better.  I know sometimes my expectations can be high, but this seemed way to negligent for our men and women in white coats we trust to heal us.

 

This brings me to a topic that seems hot anywhere dealing with gluten free and celiacs, that since our sickness is so  freaking hilarious to comedians like Fallon, Kimmel, and crew  that no one  is taking it seriously . I find it very tacky that the people making the jokes are just as uninformed as their targets they interview.  I knew things was bad but this was borderline gross negligence for people what I experienced Wednesday. I could expect this out of  a restaurant but from med experts. At least I can say the Dr. and staff who diagnosed me had a more  empathic and understanding of what I am having to deal with. I guess they set the bar quite high and when other med professionals who do not get it it makes me feel well upset mixed with a side of confused. Does anyone know of any pharmacies that are chains that are quite strict about handling product to ensure people do  not come in contact with things they shouldn't. Back in my hometown we had a small chain that was quite awesome at that and catching inconsistencies that the Dr. missed to protect the patient from unpleasant effects. Such as a incident with a  extended family member who was given meds that could raise his insulin quite high and he is a diabetic type 2.

 

edited to be fair about one  individual at the office.

 One point I do want to make is one of the nurses I did speak with their yesterday did apologize about the  situation, and did seem to understand that she was dealing with something quite serious. So I can honestly say not everyone in that office was clueless. 

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There isn't anything a doctor can do about your meds. Yes, celiac is an important part of our medical record but it just isn't always something that is important or relevant to a situation. The doctor will prescribe what he needs to and that's all they can do. It is up to us, as individuals, to make sure we are getting gluten free medications. Some work with a pharmacist they feel they can have a good relationship with and let them check. There is approximately a snowball's chance in hell I'd trust my health to a Walmart employee. Pharmacist or not. When I get a prescription, 100% of the time, I either go to or call the pharmacy and ask for the name of the manufacturer that they would use to fill it. In general, you should also ask for the NDC number because most manufacturers will ask you for this. With Walmart, the NDC isn't correct and you'll instead need to ask them for the pill imprint information so you can describe the pill to the person on the phone. (I have no idea why Walmart doesn't have appropriate NDCs but I've learned to live with it.) I used to joke that I have more pharmaceutical company's contact information in my phone than friends. :lol: At any rate, I call the manufacturer and ask if the drug is gluten free. Nearly every time they say something to the effect of "we don't use any gluten containing ingredients in this drug but because we don't test the final product we don't make any gluten free claims blah blah blah" which is a CYA statement. They are just trying to make sure no one is going to sue them. Because of the strict guidelines in place and how serious it would be if CC did occur, I've never been worried about it. If there were CC happening it could kill people because of drug interactions, so it just isn't going to be a problem.

 

I'm not saying everything was handled for you was okay. You were treated poorly and that is never okay. But please remember that this is a disease that doctors really can't treat at all. All they can do is tell us to stop eating gluten and ship us off. Treatment is completely in our hands once we are diagnosed. Because of the seriousness of the disease, I don't place my trust in a group of people to simply told me to go home and google how to be gluten free. It seems very overwhelming at first, but it all becomes second nature and you'll shrug things like this off because we can't expect the world to conform to knowing enough to actually helpful.

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Addy is correct.  And also, if you have a renewable script, check to make sure the Pharmacy did not get it from a different supplier.  If they did, you have to check again.  You can always request the supplier stay the same but it doesn't always mean that they will do it co check every time.

 

Colleen

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Addy is correct.  And also, if you have a renewable script, check to make sure the Pharmacy did not get it from a different supplier.  If they did, you have to check again.  You can always request the supplier stay the same but it doesn't always mean that they will do it co check every time.

 

Colleen

 

Ah yes, that's something else we have to be on top of. And it has to be checked before you pay for your meds because they can't take them back. Every time I refill I stand there and ask them to verify the manufacturer to me. I also call the manufacturers of the drugs I take regularly every year on my celiac birthday just to make sure they're still gluten free.

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uggggg, something else I have to look into...it never occurred to me that my meds could be an issue....

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 I do understand that, and it could have just been that  facility other healthcare  locations in my city are great when working with people. It was just shocking to see a particular facility to behave so nonchalant. I did look at their reviews over night and they did not receive good reviews, I am just glad I came in for a leg and foot issue. The issue again also could explain certain things was conducted they way they was. 

There isn't anything a doctor can do about your meds. Yes, celiac is an important part of our medical record but it just isn't always something that is important or relevant to a situation. The doctor will prescribe what he needs to and that's all they can do. It is up to us, as individuals, to make sure we are getting gluten free medications. Some work with a pharmacist they feel they can have a good relationship with and let them check. There is approximately a snowball's chance in hell I'd trust my health to a Walmart employee. Pharmacist or not. When I get a prescription, 100% of the time, I either go to or call the pharmacy and ask for the name of the manufacturer that they would use to fill it. In general, you should also ask for the NDC number because most manufacturers will ask you for this. With Walmart, the NDC isn't correct and you'll instead need to ask them for the pill imprint information so you can describe the pill to the person on the phone. (I have no idea why Walmart doesn't have appropriate NDCs but I've learned to live with it.) I used to joke that I have more pharmaceutical company's contact information in my phone than friends. :lol: At any rate, I call the manufacturer and ask if the drug is gluten free. Nearly every time they say something to the effect of "we don't use any gluten containing ingredients in this drug but because we don't test the final product we don't make any gluten free claims blah blah blah" which is a CYA statement. They are just trying to make sure no one is going to sue them. Because of the strict guidelines in place and how serious it would be if CC did occur, I've never been worried about it. If there were CC happening it could kill people because of drug interactions, so it just isn't going to be a problem.

 

I'm not saying everything was handled for you was okay. You were treated poorly and that is never okay. But please remember that this is a disease that doctors really can't treat at all. All they can do is tell us to stop eating gluten and ship us off. Treatment is completely in our hands once we are diagnosed. Because of the seriousness of the disease, I don't place my trust in a group of people to simply told me to go home and google how to be gluten free. It seems very overwhelming at first, but it all becomes second nature and you'll shrug things like this off because we can't expect the world to conform to knowing enough to actually helpful.

 

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This is exactly what just happened to me.  The pharmacy changed suppliers and I called the new supplier and was told none of the fillers had gluten but they don't test for gluten.  I was nervous but took the new one anyway...6 days later my stomach was in pain for 7 or 8 days straight.  I went back to the pharmacy and explained what was happening and they agreed to call the old supplier and get me another 90 days worth so I can find another pharmacy that will provide the same for me, which I have luckily.  So be careful if suppliers on any of your meds change!

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Hospitals in general don't know a damn thing about Celiac.  When I had my appendix out it was a Friday evening and I got back to my room at 7:30 p.m. starving, I hadn't eaten in two days. The place to order food from was closed so I asked a nurse if they had anything for me to eat.  They have cans of soup and sandwiches, neither of which I could eat.  The nurse said to me " oh, we can just take the meat off the bread" , ahhh no you can't.  They were clueless.  Thankfully I had someone to bring me food.

 

My daughter had tubes put in her ears last week and I talked to two different nurses before we were there to let them know she was Celiac, not to feed her crackers or muffins.  I told the nurse that did our pre-op, and the nurse from post-op.  I gave them the gluten free crackers I had for her.  They still tried to feed her a muffin.  Thankfully she knew enough to tell them she couldn't have it.  I would have been so pissed if she woke up and was out of it and they fed her a muffin.

 

I get my scripts at Walmart, and the pharmacist here is great. He even knows me by face and name, helps me all the time.  He calls manufacturers for me, writes down the names of people he talks to on my script bags and the number he called. I was leery at first, called a couple of numbers and they told me exactly what he did.  Now the days he has off is another story....

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You've been given good advice about meds, but as for the urgent care facility, they should be reported IMO. Any time a person wants to update their info and the office doesn't do it, they should be reported. Suppose it was a penicillin allergy or something of that nature and they failed to put it in your chart? You could easily end up dead! I don't know to WHOM it should be reported - AMA? Or maybe the facility is part of a chain and you could go to the head of that chain?

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Thanks for the warning. I guess my GI being so helpful and stuff again like I stated raised a bar of expectation that sadly most facilities don't rise to. 

Hospitals in general don't know a damn thing about Celiac.  When I had my appendix out it was a Friday evening and I got back to my room at 7:30 p.m. starving, I hadn't eaten in two days. The place to order food from was closed so I asked a nurse if they had anything for me to eat.  They have cans of soup and sandwiches, neither of which I could eat.  The nurse said to me " oh, we can just take the meat off the bread" , ahhh no you can't.  They were clueless.  Thankfully I had someone to bring me food.

 

My daughter had tubes put in her ears last week and I talked to two different nurses before we were there to let them know she was Celiac, not to feed her crackers or muffins.  I told the nurse that did our pre-op, and the nurse from post-op.  I gave them the gluten free crackers I had for her.  They still tried to feed her a muffin.  Thankfully she knew enough to tell them she couldn't have it.  I would have been so pissed if she woke up and was out of it and they fed her a muffin.

 

I get my scripts at Walmart, and the pharmacist here is great. He even knows me by face and name, helps me all the time.  He calls manufacturers for me, writes down the names of people he talks to on my script bags and the number he called. I was leery at first, called a couple of numbers and they told me exactly what he did.  Now the days he has off is another story....

 

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I am looking into that. And two it could have also been done post visit. I am just used to facilities in my old town that was right on that sort of thing. 

You've been given good advice about meds, but as for the urgent care facility, they should be reported IMO. Any time a person wants to update their info and the office doesn't do it, they should be reported. Suppose it was a penicillin allergy or something of that nature and they failed to put it in your chart? You could easily end up dead! I don't know to WHOM it should be reported - AMA? Or maybe the facility is part of a chain and you could go to the head of that chain?

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You've been given good advice about meds, but as for the urgent care facility, they should be reported IMO. Any time a person wants to update their info and the office doesn't do it, they should be reported. Suppose it was a penicillin allergy or something of that nature and they failed to put it in your chart? You could easily end up dead! I don't know to WHOM it should be reported - AMA? Or maybe the facility is part of a chain and you could go to the head of that chain?

 

This is the part that I was thinking was the being treated horribly. I really don't know what can be done about it, but it isn't right. I guess I wouldn't give it too much thought around here. I have choices in urgent care centers. There are 3 I could go to, 2 from the same organization and the last associated with the clinic my doctor is part of. I forget that not everyone has options. Certainly look into what Bartfull said and see who you can report that to, maybe someone higher up in the healthcare organization they're part of?

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I know the pain too! I've mentioned to several doctors I'm celiac and can't have gluten and they write "allergies: gluten - food" and I have to point it out to them that gluten is in a lot of medications, lotions and sanitizers not just food. Then they're like oh! I never thought about that.

Although this week I went to my new pharmacy and asked them directly if all my meds are gluten-free and they told me to come back that afternoon for them as they're going to call all the manufacturers and make sure. I told them i had no problem calling myself but they insisted it was for my health and it's their responsibility to make sure the medication they prescribe me won't make me sicker. I was actually really surprised!

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We get all meds in NEW, UNOPENED bottles whenever we can. They use the same trays and spatulas to count everything all day, all night, week after week , month after month....you get the idea. Pills in multi dose bottles are often large and pills bust open all the time. So if med #1 is gluten-free but passes over a tray where drug #2 was counted you have CC.  Now this is easier with some meds (DS gets inhalers and epi pens which obviously aren't an issue) and his generic synthroid is 100 ct. per bottle BUT that bottles is $11 and has 200 doses for him so it's not an issue.

 

If it is a multi Pt. bottle that you CAN NOT afford all of, ask them to clean the trays and spatulas and to take it from a NEW unopened bottle as they usually have more than one on hand. If not, they should be able to order one and get it to you the following day.

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I was told to find my own medicines when I could not have the ones the doctor ordered!  One pharmacist referred me back to the doctor.   Thankfully, I discovered a pharmacist that truly helped me to find safe alternatives that I could have.  Another   She told me what dosages to take and a procedure to use! 

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I find that using a free standing (not part of a chain) pharmacy is best. They generally are more interested in the customer as a person and are willing to bend over backwards to help. Ridgeland Discount Drugs in Ridgeland, MS, is an excellent example if you are in the area.

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I will in the future try to  find one of those where I live. I am still learning the town I live in, I have been here a year, but with working overnight it can be a challenge to get out and  find things.

I find that using a free standing (not part of a chain) pharmacy is best. They generally are more interested in the customer as a person and are willing to bend over backwards to help. Ridgeland Discount Drugs in Ridgeland, MS, is an excellent example if you are in the area.

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I'm not gonna read this whole thread, I've had too good of a day today and just reading half of the original post is starting to make me mad. So I will reply to the part of the OP that I read...

I have had a doctor in the ER at "the top medical facility in the area based on patient care and reviews" tell me "you don't have to be eating gluten to take a wheat allergy test for celiac"....then tell at the medical student who was shadowing her when the med student defended me trying to correct her errors. The number of medical professionals who know NOTHING about celiac is ridiculous. Especially when they don't want to learn from is "uneducated" folks.

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I'm not gonna read this whole thread, I've had too good of a day today and just reading half of the original post is starting to make me mad. So I will reply to the part of the OP that I read...

I have had a doctor in the ER at "the top medical facility in the area based on patient care and reviews" tell me "you don't have to be eating gluten to take a wheat allergy test for celiac"....then tell at the medical student who was shadowing her when the med student defended me trying to correct her errors. The number of medical professionals who know NOTHING about celiac is ridiculous. Especially when they don't want to learn from is "uneducated" folks.

Georgia guy.  Remember a wheat allergy is different than Celiac.  Allergy testing is different.  Maybe that was the case:

 

Colleen

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Georgia guy. Remember a wheat allergy is different than Celiac. Allergy testing is different. Maybe that was the case:

Colleen

Colleen, I'm aware of that, but this statement was when I was back on gluten so I could get accurate blood work. The doc asked me what I ate, and I told her, and then said "I know it was the gluten causing my problems and I was eating gluten again to get accurate testing for celiac".

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In more than 12 years of being gluten-free, I've never been able to attribute a glutening to meds.

 

richard

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I got a call from a pharmacist at our mail order pharmacy yesterday.  He said that my current meds are gluten free but he said that because it was generic there was no way they know from one refill to another which brand they would have and suggested using a local pharmacist instead.  I'll have to go talk to the pharmacy and see what they say now.  I haven't had the best luck with the chain pharmacy we moved our meds too so I may have to find someone else.

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I realize this topic is over a month old but felt the need to speak up.  I am a pharmacist.  I have celiac disease so I understand the need for vigilance regarding things we eat/take/contact.  I also understand the plight of the medical community and will speak to that. First of all, in pharmacy school, NOT ONCE, EVER, EVER, was did the term celiac disease show up in any classes.  EVER.  I left pharmacy school unaware that this disease even exists.   (I also have Addison's disease, which I had never heard of until I was diagnosed years after graduating pharmacy school.  So it happens)  ) So I am not surprised that the medical community as a whole is not on top of this.  We do learn of new conditions as time passes, along with details of all the new drugs that the FDA releases each year.  That does not mean that we can learn all of the ins and outs of every condition, though I believe that we, in general, try to stay on top of things as best we can. 

 

Now, onto the drugs we need.  Sometimes, there is only a single provider for different drugs.  You take it or leave it--there are no options.  If there is a generic option for your drug, there are often several suppliers.  Guess what?  We, as pharmacists, nurses, doctors, do not get a manual that tells us which drugs by which manufacturers are gluten-free.  If given the time (meaning without the patient standing in front of us drumming their fingers on the counter, which happens a lot!) your pharmacist can call the supplier or manufacturer and ask about the gluten content.  Having done that before, I can ell you that you will not always get a definitive answer.  I will say that I have never been glutened by taking any drug.  YMMV, of course.  Also, some pharmacists' hands are tied when it comes to which drugs by which manufacturers are ordered.  Chain drug stores have contracts with certain suppliers and those suppliers may only carry a certain number of manufacturers' products when it comes to generics.  There is nothing that pharmacist can do if their employer has total control of that. 

 

Now, onto no one placing the "celiac" note in the patient chart of the original poster. There's no excuse for that.  There was nothing that practitioner could do regarding your celiac disease, but to ignore it was wrong.  As for the pharmacist not helping, no excuse.  As long as you give him/her time to find out your answers--which may take a while--then it should happen that way.  I'm sorry you ran into an issue.  There are duds in every profession and maybe you found one in that pharmacy. 

 

As it always has been, celiacs really need to do pretty much all of their research, whether it be for food or drugs or what have you. It's no different now.  I don't know if that is right, but that's the way it is.  As prevalent as diabetes is, I have been involved with doctors and nurses who really don't get it.  They don't understand the insulin pump I have, they don't understand insulin dosing.  It falls to me on those times I end up in the ER or admitted to the hospital to take care of my own diabetes.  It's going to be the same regarding celiac disease for the most part for all of us.

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There is no federal regulation in place that requires pharmaceutical companies to disclose whether or not a medication contains gluten. Thus you can't really expect pharmacist's to know this information. Because they don't have to. I work as a pharmacy technician at Walmart and none of my pharmacist's know very much, but they told me the next time I get any medicine they'll do their best for me. But honestly, if you are going to take a one time dose of a medication, you probably will be okay if it has gluten in it. Now if you're on synthroid, birth control, lisinopril, or any other long-term health maintenance medication, you might want to seek out this information. But if you're taking a Z-Pack, you'll be fine. 

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      I don't worry about the same facility, but I check if it is on the same lines. I think it is usually a good idea to find out if things are made on shared lines. And if they are made on the same line as gluten-containing products how good is the cleaning in between? Chocolate is a good example of this. For example, I contacted a company whose chocolate I used to eat before being diagnosed and they outright told me they are not good about cleaning on shared lines and it is not safe for allergies or celiac. I have had this response from other companies as well (especially when it comes to chocolate sadly). I think this is why Godiva is not safe. Its just a good idea to check.
    • TRUSTING OTHERS about GLUTEN! how do you know if someone has used gluten free flour?
      Wow you all have more balls than I do. I've been gluten free since 2007 and I'm still afraid of offending people. It gives me lots of troubles, really. I'm more like rockstarkate I guess...the "people pleasing" aspect.  I love how you all just have the flat out rule I Will Not Eat It Unless I or a Celiac Made it. (Or a trusted family member).  I still simper and grovel and cringe and apologetically turn things away.  People still put dishes in my face and say "This should be gluten free..."  and I have to awkwardly not eat it and then seem rude.  I've done the whole...checking the bottles thing too.  I do try to dart out of things more though now. I volunteered in other countries in recent years and I felt as vulnerable as all heck, having to rely on them to make food, as well as definitely feeling like I offended people who didn't get it at all. I was feeling brave when I signed up for those but after the second time I was like okay, the fear/anxiety/stress about the food is too much. I managed to dodge out of getting sick, and for the most part people humored me...but it was pretty difficult because I don't like offending people, especially other cultures, with them trying to be nice and make food for me...pretty sure I did offend people as well as annoy many others.  Anyway...no OP, you are not alone. For sure I have trust issues eating other people's food. They say they know but I do truly doubt they are as strict as I would be.   A few times I will still brave eating something...like some little mozzarella balls with vinegar...though, I did still look at the labels.  Someone had to give me a persuasive speech and show me all ingredients (just salt and pepper) after making me chicken wings once. I do tell people, basically, NOT to make me stuff. But they still do.  Another time a friend had worked really hard and was having a terrible time and offered me a burger patty when I arrived, assuring me it was gluten free. I knew I hadn't been there to watch whether she used the "bun spatula" on it or not...but I just didn't feel like giving her a fight about it since she was having a rough time and hosts like to feel they are feeding guests, blah blah. So I ate it. And got glutened. And wailed and gnashed my teeth haha. Lesson learned.  I need to stick to my guns more. I just always feel like I'm being too "difficult" as it is. But...sigh.  It is refreshing for me to read these empowered no BS responses though. You all remind me of where I'm coming from, and not that I'm just being some kind of high maintenance, rude, crazy person. You'd think after, what, nine years now, I wouldn't still be bothered by it...
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    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
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    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
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    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
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