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Pharmacy Not Celiac-friendly


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15 replies to this topic

#1 OBXMom

 
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Posted 21 May 2009 - 08:17 AM

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?
  • 0
Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy
Elimination diet resulted in avoiding dairy, soy & corn for a time
Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

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#2 FMcGee

 
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Posted 21 May 2009 - 09:16 AM

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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#3 happygirl

 
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Posted 21 May 2009 - 10:13 AM

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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#4 ravenwoodglass

 
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Posted 21 May 2009 - 10:20 AM

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.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 hermitgirl

 
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Posted 22 May 2009 - 03:14 AM

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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#6 OBXMom

 
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Posted 22 May 2009 - 01:31 PM

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.
  • 0
Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy
Elimination diet resulted in avoiding dairy, soy & corn for a time
Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

#7 raisin

 
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Posted 22 May 2009 - 06:31 PM

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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#8 mushroom

 
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Posted 22 May 2009 - 07:27 PM

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).
  • 0
Neroli


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Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
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#9 debmidge

 
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Posted 23 May 2009 - 02:57 AM

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.
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#10 debmidge

 
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Posted 23 May 2009 - 03:00 AM

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?
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#11 debmidge

 
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Posted 23 May 2009 - 03:02 AM

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.
  • 0
Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#12 OBXMom

 
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Posted 23 May 2009 - 06:34 AM

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.)
  • 0
Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy
Elimination diet resulted in avoiding dairy, soy & corn for a time
Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself

#13 Morrisun

 
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Posted 23 May 2009 - 07:57 PM

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.
  • 0
Jennifer

#14 Fiddle-Faddle

 
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Posted 25 May 2009 - 12:53 PM

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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#15 OBXMom

 
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Posted 25 May 2009 - 06:19 PM

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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Jane

Son (10) diagnosed 10/07 via bloodwork and biopsy
Elimination diet resulted in avoiding dairy, soy & corn for a time
Feeling much better

Enterolab results indicate gluten sensitivity for daughter (14) and myself




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