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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Our new mail order pharmacy (Wellpoint Next RX) called me about my son's prevacid prescription, which he has been on for years and which we know is safe. At first she said that they cannot check for gluten because manufacturers do not have to disclose it, and she would like to remove the celiac label from my son's file or they would not be able to fill his prescriptions. I pushed back for quite a while, and she finally settled for noting that I would take full responsiblity for any gluten problems, and that I understand I cannot return any medications they send me which my research subsequently reveals to contain gluten. I asked if they could call me prior to substituting new formulas, and they won't do that. However, she agreed to make a note not to substitute generic brands.

I was shocked to learn that a pharmacy is more concerned with covering their (you know what) than providing safe medications. I think this is wrong, and I think it should be illegal. At one point she impatiently told me, "We are only concerned about active ingredients, and gluten is an inactive ingredient." I am going to write a letter to my pharmacy. Any other suggestions?

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That is completely ridiculous and outrageous, and I'm sorry you and your son are having to deal with that level of stupidity. Is there someone higher on the chain of command you can call and pester about this?

I think the FDA needs to require that everything meant for human consumption needs to be labeled for containing not only gluten, but dairy, eggs, soy, peanuts, and tree nuts. The difference with gluten is that it can be called so many different things that even people looking for it on a label can easily miss it. I've started writing to companies that do label their foods gluten-free (I'm looking at you, Kozy Shack, dahling!), but maybe we all need to write lots of letters to the FDA telling them to get off their buts and start looking out for a significant portion of the population. Is it THAT expensive for drug and food manufacturers to slap a "gluten-free" or "contains gluten" label on their products? Why hasn't this already happened?

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Send a letter of complaint to the company....I would imagine that they do not think this is good customer service.

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Contact both the company the pharm works for and also contact the FDA. It is the pharmacists job to check on the safety of any med they give you. Also change pharmacies as soon as possible letting the head office and what ever government agency liesences the pharmacist know what happened . They are not doing their job and need to be either fired or retrained or have their licesence revoked.

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I used to use Cigna's mail order pharmacy until I was diagnosed. When I contacted them, they told me due to their buying policies, which consist of only purchasing the least expensive at whatever time,(regardless of manufacturer, ingredients, advertising, etc...) that they recommended staying at a neighborhood pharmacy. If the regular insurance gives a hard time, the mail order pharmacy would contact them to have the prices overidden. The pharmacist told me that they do not check for ingredients, that they only purchase based on price, and that for my health it would be best to stay with my local pharmacy. These policies are why the mail order is so much less expensive. Many of the local pharmacies now do the 90 day supply for $10 on many generics. I have found this to be even better priced than many of the mail order pharmacies.

As far as removing the Celiac flag, as well as her excuse for why they want you to remove the flag is ridiculous. That is just poor customer service and shows complete disregard for the health of their customers. File complaints and go somewhere else.

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Thank you for your help. Writing to the FDA is a great idea. I would not be surprised if the FDA finds itself held accountable for not requiring gluten to be labeled in the courts at some point if they don't listen. I did not know some local pharmacies would fill 90 prescriptions more inexpensively, either, so thank you hermitgirl for that tip. I'll check around.

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Saying it should be illegal.. is so many kinds of unrealistic. The entire issue is about legality, already.

The fact is, companies do get sued of ridiculous things they have no personal control over, on a regular basis. It's a realistic liability. If you want to complain about how screwed up the system is.. You may want to point the finger at the root of the issue; very imperfect court system and those who abuse it. The highest abuse comes from people "protected by the ADA." Celiacs are now part of that group.. so it's no wonder corporations are starting to worry.

The pharmacy is also the messenger, in a sense. Your medicine is made by a company, that company decides what is or isn't on each line, and you take the medication. While they have to disclose inactive ingredients if you ask and they can find out, it truly is not their job to worry about that. The job is generally about the active medications. If you think they don't realize peoples' lives are in their hands, you aren't thinking very hard. If I meet a pharmacist who worries about allergens over focusing on potential dangers of the actual medicines.. I am running for the hills, and I have multiple serious allergies.

everything that woman did that you seem so offended by.. It's standard dealings for me sense going gluten-free. Re-checking the formula of my proscription each time (takes all of 2 minutes) is not the end of the world. And I wouldn't blame them if my medication accidentally contained gluten; as the messenger, it wouldn't be their fault. It's no more difficult than buying food, soaps, etc.

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It's standard dealings for me sense going gluten-free. Re-checking the formula of my proscription each time (takes all of 2 minutes) is not the end of the world. And I wouldn't blame them if my medication accidentally contained gluten; as the messenger, it wouldn't be their fault. It's no more difficult than buying food, soaps, etc.

Well, it is a lot more difficult and expensive than that. You have just ordered, blind, by mail, a 90-day supply of a particular medication you take every day. You have probably had to wait 8-10 days for it to be mailed to you. You get it and you find out (if you're lucky--or unlucky depending on how you look at it) that it has gluten. So you have lost 10 days, you have lost your co-pay, and you are still a long way from getting your medication. If you're unlucky, you have been glutened as well because this was the only way you could find out what was in it. Where do you go next?? You have paid for this medication, your insurance company has paid for this medication, it cannot be returned, and you cannot use it. Bummer!!! I seriously doubt that your insurance will refill it under coverage, whether by mail or at a pharmacy. So it basically is just another way of socking it to the celiac, price-wise. You are denied the financial benefits of 90-day renewal by mail and your co-pays have just tripled (if it is like my prescription plan--a different one).

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Our new mail order pharmacy (Wellpoint Next RX) called me about my son's prevacid prescription, which he has been on for years and which we know is safe. At first she said that they cannot check for gluten because manufacturers do not have to disclose it, and she would like to remove the celiac label from my son's file or they would not be able to fill his prescriptions. I pushed back for quite a while, and she finally settled for noting that I would take full responsiblity for any gluten problems, and that I understand I cannot return any medications they send me which my research subsequently reveals to contain gluten. I asked if they could call me prior to substituting new formulas, and they won't do that. However, she agreed to make a note not to substitute generic brands.

I was shocked to learn that a pharmacy is more concerned with covering their (you know what) than providing safe medications. I think this is wrong, and I think it should be illegal. At one point she impatiently told me, "We are only concerned about active ingredients, and gluten is an inactive ingredient." I am going to write a letter to my pharmacy. Any other suggestions?

That stinks -- but our hometown pharmacy is the same way.

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Re-checking the formula of my proscription each time (takes all of 2 minutes) is not the end of the world.

I want to check prescriptions before I take possession of them as they are not returnable. Do you have contact info on generic companies? They take the longest to check out for me...sometimes day or two; first to track down the generic then find the correct phone number. Is there are faster way that you use?

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I used to use Cigna's mail order pharmacy until I was diagnosed. When I contacted them, they told me due to their buying policies, which consist of only purchasing the least expensive at whatever time,(regardless of manufacturer, ingredients, advertising, etc...) that they recommended staying at a neighborhood pharmacy. If the regular insurance gives a hard time, the mail order pharmacy would contact them to have the prices overidden. The pharmacist told me that they do not check for ingredients, that they only purchase based on price, and that for my health it would be best to stay with my local pharmacy. These policies are why the mail order is so much less expensive. Many of the local pharmacies now do the 90 day supply for $10 on many generics. I have found this to be even better priced than many of the mail order pharmacies.

As far as removing the Celiac flag, as well as her excuse for why they want you to remove the flag is ridiculous. That is just poor customer service and shows complete disregard for the health of their customers. File complaints and go somewhere else.

It sort of makes you want to complain but then not want to complain as it could make it worse for

celiacs overall.

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Raisin, I understand some of what you are saying, but some of it seems a little unclear to me.

"Saying it should be illegal.. is so many kinds of unrealistic. The entire issue is about legality, already. . .The fact is, companies do get sued of ridiculous things they have no personal control over, on a regular basis."

I want the FDA to be held accountable. Keeping food and drugs safe is their job, and I don't think they are doing it for individuals with celiac disease. Do you disagree with this?

"If I meet a pharmacist who worries about allergens over focusing on potential dangers of the actual medicines.. I am running for the hills, and I have multiple serious allergies."

For celiacs, gluten is not an allergy, as you are probably aware. When my son takes a medicine with gluten, he suffers internal damage. This is a danger, not just a "potential danger", yet you don't want the pharmacist to focus on it?

"everything that woman did that you seem so offended by.. It's standard dealings for me sense going gluten-free. "

I don't expect the whole world to accomodate my celiac child. I never expect special foods for him at school or social events and we understand why we can't just grab an ice cream wherever his friends are going. But I don't think it is too much to expect the FDA and pharmaceutical companies to protect him. Nothing will ever get better if we don't expect it to.

(And along with deMidge, I'd love to hear about your 2 minute method of checking prescriptions.)

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Please write a letter to your state senator and also the FDA. I did this about a year ago and got an excellent response from my senator (Orrin Hatch). He actually contacted the director of the FDA on my behalf (and forwarded me the response) and I think if more Celiacs speak up about these types of situations, we might eventually make some headway.

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I just wanted to mention that being on an acid-blocker (like Prevacid) for years puts one at very high risk for B12 deficiency--and that is NOT mentioned on the package insert (but if you look at any Pernicious Anemia site, long-term use of acid blockers is considered one of the top risks for developing Pernicious Anemia, which is a severe B12 deficiency). Celiac itself causes nutritional deficiencies, so it's a double whammy for us.

For many of us, celiac/gluten intolerance manifested in severe reflux, making acid blockers necessary. Most of us were able to at least greatly decrease our acid blocker use after going gluten-free. One thing to be aware of with acid blockers is that you can't quit them cold turkey--there is a SERIOUS rebound effect (another thing not mentioned in the package insert!). If possible, cut the dosage in half, and then do so again after a few weeks. If you have a capsule, it might be worthwhile to buy over-the-counter Prilosec tablets (generic is available at Costco), and a pill cutter.

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Thank you so much for taking the time to share this with me. I did not know any of this, and looking at the symptoms, it is quite possible my son could have a B 12 deficiency. He tires quickly, and a couple of times lately he has told me his hands or feet have fallen asleep and that they still have the tingly feeling hours later. I will definitely try to ease him off of his prevacid this summer, and supplement with extra B 12. He has been on prevacid most of his life, and I have to admit feeling like I must have fallen down on the job somewhere not to have known this before . . . but still, I'm so glad to hear it now - thank you!

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Yes, it's amazing how things can spiral, isn't it? And even more amazing how little the doctors know about any of this, and how they treat each symptom with a drug instead of looking for the cause of the symptom.

Reflux can have many causes, but if your son was already diagnosed early on with celiac, I'd suspect that gluten was the original cause of his reflux (which would be a good thing, as then he would no longer need the acid blocker).

While weaning off the acid blocker, I would go very easy on things like lemonade, orange juice, and tomato sauce, especially in the evening. Maybe water the lemonade and orange juice down, if he really wants them. Then you can phase them back in and see how things go.

The B12 deficiency websites mention that most B12 pill supplements contain cyanocobalamin, which is supposedly not easily absorbable in pill form. They suggest sublingual pills--pills that melt under your tongue and go directly into the bloodstream, bypassing the stomach (and any leaky gut!). There seems to be some debate about which form of B12-cyanocobalamin or methylcobalamin--is better. I have never tried the cyano but my symptoms improved enormously with the methyl.

You haven't fallen down on the job at all--it's not listed anywhere on the package insert, nor do the doctors know about it. They also don't know about the rebound effect of stopping the acid blockers. The common experience (which was mine) is to try stopping--and to have a surge of severe acid reflux that lasts for days, convincing one that one OBVIOUSLY needs to keep taking the acid blockers.

Isn't that convenient for the manufacturers of the acid blockers?

But weaning down seems to work just fine. I used to take 300 mg of Zantac twice a day, and then whatever the strongest dose of Nexium was, twice a day--and now take 75 mg of Prilosec once per day, and am trying to cut that. (I only found out about the B12/acid blocker link a couple of months ago.)

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