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FDA Sued for Failing to Keep Gluten Out of Medicines

Celiac.com 03/18/2015 - A man who suffers from celiac disease has sued the FDA for allowing gluten to be used as a coating on prescription drug and over-the-counter medicine capsules.

Photo: CC--SpongeRemember, people with celiac disease can suffer intestinal damage when they consume gluten. This can damage can lead to neurological, among other disorders.

The man, Michael Weber, was taking a generic drug seven years ago, and developed side effects consistent with ingesting gluten.

Weber says he was unable to determine the drug’s gluten status through his pharmacist, and

Weber went on to petition the FDA to either eliminate wheat gluten in medicines or require new labeling on drugs containing the protein.

In 2011, the FDA sought public comments about the issue. In 2014, the FDA issued gluten-free definitions and labeling standards for commercial foods, but has failed to act on drugs. So Weber has now filed a lawsuit to demand the FDA do something. The complaint can be read here.

This raises a couple of questions: Do people with celiac disease deserve to know if there is gluten in their medicine? Do they deserve access to medicines that are gluten-free? Should the FDA definitions and labeling standards also apply to drugs and medicines?

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54 Responses:

 
Rose
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
18 Mar 2015 6:07:39 PM PST
Absolutely!! We have every right to know!!! The tiniest amount of gluten makes me "hospital sick", I am so very sensitive to it.

Why shouldn't the same laws apply to all? The same allergens apply to us...food or drugs!

 
Sue
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said this on
19 Mar 2015 8:29:18 AM PST
After discovering my Dad and I had celiac disease I was amazed that it was so hard to figure out if medications contained gluten. Pharmacists didn't know and were dismissive when asked if they could find out. My Dad's pharmacist told him to check the internet. He doesn't even know how to use the internet. On several occasions I was given the number of a drug company and told to call them myself, which is fine except that the company ask which pharmacy I was calling for and I wasn't representing any pharmacy. Recently things have gotten better at the pharmacies near me but why did it take so long?

 
Deborah Ross
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said this on
23 Mar 2015 6:20:04 AM PST
This was good but more detail would have been even better. I have had (Rochester, NY area) good luck getting medications gluten free at Wegmans Pharmacy. I like the fact that they list all ingredients plus allergens list on the otc meds, as I have had to learn to become a constant label-reader...

 
Michael
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said this on
23 Mar 2015 6:25:12 AM PST
Thank you so much Michael Weber! Finally one of us came up with the money to litigate! A pharmacist or technician has to phone manufacturers of generic drugs, which can take five days, to find a gluten-free version. Then they usually have to order the drug, and I wait two more days. This is because they run pills through a counting machine, where they get contaminated with gluten. I have to go into the pharmacy every time and remind them that they have to do this and count out the pills by hand with clean equipment. I have to call and check the progress and verify who counted them out and if they used my special protocol when I pick up the prescription. Once they forgot and ran some of my tiny thyroid pills through the machine. I had just changed my cell phone number and they did not get ahold of me until I had taken 6 pills. I then developed pyloric spasms for 6 days and gluten ataxia for 4 months. We need the FDA to ban gluten in all medications, including over the counter. I am afraid we need a national policy of testing all people for celiac disease and development of tests for non-celiac gluten sensitivity before we have enough political clout to have this come to pass, policies I'm sure the all powerful corporations will prevent for the rest of my life.

 
Christy
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said this on
10 Apr 2015 1:27:33 PM PST
Wow! I thought I was aware and safe guarding myself, yet have not even considered cross contamination from the pill counting method being used! I'm so glad you brought up that point to check!
I've gotten glutened from several medications, and share the same frustrations with getting the correct information as everyone has mentioned.

 
Sue
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said this on
27 Dec 2015 5:23:57 PM PST
While I agree it is absurd that the manufacturer should not be required to print ingredients as food manufacturers are required to do - I must point out that the minority of the populate is celiac (I have celiac) and to ban gluten to protect the minority is also 'absurd'. If the world caters to us with celiac, then why wouldn't the world cater to everyone....including those without celiac? Legislation is a slippery slope that will always be used against everyone at some point so be careful what you wish for. Information should always be required and legislated, but to legislate action such as bans or testing - that will inevitably be used against you at some point. If they can require a ban for gluten they why can't they require a ban on sugar to accommodate the diabetics? Or a ban on peanuts to protect those with peanut allergies? Personally, I'd like to ban certain plants and even certain perfumes because I have awful allergies..... Be careful what you wish for.

 
Phil
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said this on
23 Mar 2015 6:48:41 AM PST
I have had the same issue with my prescription drugs. My pharmacist does what he can to find out, but I've had to take risks I am not happy about. We recently had the conversation again when my insurance company would not pay for the gluten free medication I had been taking and instead made the pharmacy change to a drug that the pharmacist could not confirm. It's time for ALL labeling to be mandatory from GMO to allergens, etc.. We have the right to know what we are consuming whether for pleasure or health.

 
diane
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said this on
23 Mar 2015 6:49:32 AM PST
Would anyone question that someone with diabetes needs to know the sugar content in the food or medicine they are consuming? Should a child with a peanut allergy be informed if the medicine has peanuts? Why shouldn't gluten be treated the same? People don't understand that CELIAC is a REAL disease. The world is consumed with the fad diet of avoiding gluten, and the inevitable backlash of haters for the gluten intolerant. This has a detrimental effect on the TRUE gluten intolerant who have an auto-immune DISEASE that can HARM them if they consume gluten. Public attitude seems to be "oh come on, gluten won't really hurt you, you are just doing it as a fad." Hopefully meds will become better labeled. I always ask the pharmacist and they typically say "oh yeah, it's gluten-free" but now I know I probably shouldn't trust that dismissive answer.

 
Ann W
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said this on
23 Mar 2015 7:07:38 AM PST
I agree. We DO have a right to know what we are ingesting: food or drugs. I , too, have had the answer" check the internet." If I can't prove it's gluten free, then I can't take it. And my Docs all know that, too. YES, the FDA needs to fix this.

 
Jeff
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said this on
23 Mar 2015 7:14:55 AM PST
Comments are fine, but what we need are amicus briefs filed by all of us who agree with this action.

 
Shelley
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said this on
23 Mar 2015 7:30:38 AM PST
We have every right to know; I think this is awesome! Even my vitamins I always order from Puritan pride are listed gluten free, soy free, etc., as does Costco.

 
Stephanie
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said this on
23 Mar 2015 7:40:34 AM PST
I tried calling a manufacturer and they didn't understand me. Now I am on every junk mailing list. I know it is them because my name is Stephanie and they called me Stephen. All the mail comes addressed to Stephen.

 
Susan Holmes
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said this on
23 Mar 2015 7:47:46 AM PST
I wish they would require medications to list all the known allergies. I react to cow milk also. The gluten labeling should also include any medications that are gluten derivatives. My daughter cannot have vitamins that are derived from gluten but supposedly have all the gluten processed out.

 
Linda
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said this on
23 Mar 2015 7:50:57 AM PST
Absolutely medications should be labeled. For many years Synthroid was the only thyroid medication and they state that they do not know if there any gluten. Too bad for all of us who had no choice but to take it anyway. In the last few years the generic Synthroid states that it is gluten free.

 
Jenny
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said this on
23 Mar 2015 7:57:20 AM PST
I have a similar story and we too will be filing a lawsuit against the FDA when our vaccine hearing is complete. We asked the FDA CDC etc. in 2008 to label the tdap containing milk. Milk (& gluten) damages my husband's stomach and prior to vaccine doc noted Iga positive to gluten and casein yet injected vaccine without proper knowledge and labeling. Destroyed his adrenal glands and stomach parietal cells within 7 days. Many letters sent to the FDA etc begging for labeling and their responses are unbelievable. Need to find an attorney for our case.

 
Janet
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said this on
23 Mar 2015 8:09:16 AM PST
In UK, this already exists in prescribed medicines.
OTC items are different.

Wishing my USA Coeliac friends..improved health....

 
Candace
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said this on
23 Mar 2015 8:26:22 AM PST
I have to take thyroid meds. What good is it if the meds are poisoning me? Yes. Gluten should be labeled everywhere.

 
Aims
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said this on
23 Mar 2015 8:33:54 AM PST
My pharmacist studies every drug prescribed for me via the information he can get - before issuing my medications.

I've had so many problems with gluten in my meds and it took me a long time to discover what was the cause.

I'm surprised the FDA isn't concerned about this. If there was otherwise something harmful in the medications they'd be all over it.

 
Aims
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said this on
23 Mar 2015 8:51:35 AM PST
Calling wheat 'protein' is a misnomer. It is actually more carbohydrates than protein. It also contains fiber, vitamins, trace metals, and sugar.

A better choice of a word would have been better than 'protein'.

 
celiacDMC
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said this on
21 Dec 2015 8:03:04 AM PST
@Aims, you must not be a celiac. You are correct that describing wheat as a protein is not accurate. However wheat GLUTEN is a protein that we celiacs react to. There are some wheat products where this PROTEIN has supposedly been removed. However, some people are so sensitive they even react in those cases. There are times when the 20 ppm food labeling standards are useless for me because I react to much less exposure.

 
Luann
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said this on
23 Mar 2015 8:59:45 AM PST
This is not a COURTESY. This is a HEALTH ISSUE.

 
Barbara

said this on
23 Mar 2015 10:38:58 AM PST
I took a generic medicines while in the hospital and it made me sicker then the condition that brought me to the hospital. It was not until I got back on the brand name medicines prescribed by my doctor that thing began to clear up. All drug should be labeled GF or non-GF so choices can be made that will enhance well being and healing.

 
Lynard
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said this on
23 Mar 2015 10:56:07 AM PST
This is huge.

 
Liz
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said this on
23 Mar 2015 11:26:50 AM PST
We must have gluten labeled. We must have GMOs labeled. Newest issue: Arsenic in wines. WTH are they thinking?

 
Barb
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said this on
23 Mar 2015 12:47:13 PM PST
Yes, medicine should be labeled for people with celiac. Some people take many meds so they may have a constant detrimental affect and we are powerless to even investigate. Even my pharmacist has no way of knowing the fillers or additives from batch to batch coming from overseas suppliers. Especially the generics! Which our insurance wants us to use. I would think that everyone would want to know this, not just celiac patients!

 
marie
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said this on
23 Mar 2015 1:28:03 PM PST
I am tired of asking pharmacists if this medication is gluten free and them telling me they don't know and for me to call the drug company myself. As a pharmacist, they should know this, just as they are supposed to alert you if a medication you may already be taking, will interact poorly with the new medicine.

 
Jen
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said this on
23 Mar 2015 1:38:05 PM PST
I've gone to pharmacists who have no idea and I have the prescription transferred. I go to Wegmans now.
But, even there they read the ingredients and aren't sure what is it so they call the company. One of the issues is that companies aren't open on weekends.
Another issue that should be addressed are hospitals that don't know what gluten is and are serving meals that either contain gluten and shouldn't or that aren't balanced... like a pudding cup for dinner because that was all they could find that was labelled gluten free.
I'm glad someone is suing! There is no reason gluten can't clearly be labelled as should peanuts, dyes, wheat, etc.

 
Cindy
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said this on
23 Mar 2015 2:10:18 PM PST
I hope the FDA will now act on gluten in medicine. I can no longer tell if I've been glutened at least in the short term. I don't worry about food only my meds. I will have no way of telling until I've been poisoned for several days. I keep tract of my medicine and when I open a new bottle. It would be so nice if I didn't have to worry about my medicine making me sick.

 
Diane
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said this on
23 Mar 2015 2:27:00 PM PST
Thank you Michael Weber. Over the counter and prescription medicines are a real problem for me as well as many other celiacs. I hope his actions get us moving forward on this key issue.

 
Jodi
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said this on
23 Mar 2015 2:59:30 PM PST
Yes, absolutely! I can't believe they haven't done it yet. It is so hard for people like us with celiac disease to stay safe. I also had a thyroidectomy October 2013, therefore I must take hormone replacement for the rest of my life, and even those medicines are iffy. I just stopped taking liothyronine by Sigma Pharm, because I've been really sick lately....who knows There's probably gluten in it!

 
Sue
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said this on
27 Dec 2015 5:07:35 PM PST
I just wanted to say that in Nov 2013 I started taking Sigma Pharm Liothyronine and within about 6 weeks I started having a terrible reaction - it started with acne, soon moved to terrile cystic acne and I never even had acne as teen. My asthma was terrible, I always felt like I couldn't catch my breath. I lost 10 pounds and am already quite thin. I was never sleeping but always tired. My emotional state was just off the charts - I was so 'nuts' I could barely be around myself. All this and my TSH was perfectly consistent for me. It was awful. After 4 months, Feb 2014 I changed to Paddock labs and it took about 2-3 months before my body seemed to 'heal'. I also am celiac...I knew it was the Sigma Pharm that caused these problems, I wonder if it was gluten. I did have my igg/iga checked in Dec 2014 but that was 10 months.

 
Jen
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said this on
23 Mar 2015 3:06:01 PM PST
Absolutely, my daughter and I are extremely sensitive to gluten the drug companies should show us some respect and either get rid of the wheat/gluten all together or at least identify it on their labels.
I will say my pharmacist is very patient with me when looking up ingredients but it should not be this difficult.

 
Justin
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said this on
23 Mar 2015 3:11:14 PM PST
Yes. If a drug had peanuts in it for some reason wouldn't they list it because people with a peanut allergy could die. Well so can those with celiac if they keep damaging their intestines.

 
Laurie
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said this on
23 Mar 2015 4:10:50 PM PST
My daughter has celiac disease and I also was amazed that it is so hard to determine from a medicine's label if it has gluten in it. A technician at our pharmacy does his best to find out what he can for us with prescription drugs, but we don't always feel certain. Also, trying to find out if an over-the -counter cold medicine is gluten-free from the label is almost impossible. In sum, we would love medicines to be gluten-free, but at the least we believe labeling on medicines should be such that you can discern whether a drug has gluten or not.

 
Donna
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said this on
23 Mar 2015 4:41:42 PM PST
I totally agree, we need to know if gluten is in our meds. I have had problems with prescription meds that I have taken for years change their formulas. The happened with Cimbalta. They added gluten, I got really sick. It took me almost 3 months to figure out why I had the reaction. Finally realized it was a prescription The drug company was many times, no answer as to if the Cimbalta had been changed. They finally contacted my pharmacy and told them they had changed the formula. My pharmacy tried for the 3 months, took the drug company that long to admit the formula change. Drug companies need to be more concerned about the problems from gluten on celiac patients.

 
Gene Ann
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said this on
23 Mar 2015 5:34:02 PM PST
Absolutely!!! Especially with so many insurance companies requiring that you use the generic version, it can be a real problem if the generic has gluten and the name brand doesn't. That information should be readily accessible. Big Pharma and insurance companies need to understand the problem that their substitution can cause for individuals sensitive to gluten. Plus the people that you are required to contact need to be educated to understand that any gluten can be a problem for some people.

 
glenda hendrix
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said this on
23 Mar 2015 6:37:02 PM PST
I have had this issue since I was diagnosed in 2009 with celiac disease. I tried to get the brand name medications because they usually do NOT contain gluten. My insurance company refused to pay for the brand medication even with a letter from my GI MD! I too have asked the Pharmacist about the gluten content of medications, they have no clue! You, as the patient have to do your own research to find the drug company, the phone number and if you are lucky, they will tell you the gluten content! I have had a few that said it was none of my business and would not tell me!I I really try my best not to get contaminated in any way but with medications you do NOT have any control! The generics are changed at the pharmacy based on availability and price! You may have a GF one for a few months then one with Gluten!! I have found TEVA medications, from Israel, almost all of their medications are GF! You have to read the labels on the OTC medications and know the "hidden" terms for gluten to know if they are GF!

 
Tonya
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said this on
24 Mar 2015 2:35:59 AM PST
Yes, when diagnosed with celiac I was given a list of supplements I needed to take. Right from the start I was diligent with my diet and couldn't figure out why I was still feeling poorly. It was the gluten in my vitamins! What's a girl to do? I need the extra supplements but they make me feel horrible or I don't take them and compromise my health.

 
anne
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said this on
24 Mar 2015 3:08:55 AM PST
I fell and severely shattered my arm. In the ER they gave me IV pain meds..then had to give anesthesia block to put arm in cast till next day surgery. A sedative was also used. In ER I repeatedly vomited and wretched. 3 weeks later and a total of 90 yes 90 vomit episodes and brain fog pain I knew was glutened by IV meds. Docs said impossible. I researched and found that some drugs IV wise are filtrated with gluten. Then pill pain meds did same reaction..not even narcotics...so I called Teva pharmaceuticals...could not guarantee spelt contamination. The med was on gluten free list.
I stopped it and was way less sick 24 hours later
and each day since is less glutened symptoms.
I lost almost 10 pounds from loss if appetite and vomiting. The bloodstream is bloodstream.. if diabetic and eat too much sugar..that glucose effects organs blood and ultimately bloodstream. I cannot separate one blood route from another or else our other organs systems in any disease would not take such a hit.

 
John Taylor
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said this on
24 Mar 2015 5:25:34 AM PST
It is a very serious requirement to know what is in the medicines taken by people with food intolerances...and today this information takes a significant effort to obtain...and if you do succeed in getting an answer, it may be wrong. These materials are toxic to us. The information is required for us to live. It takes me a month to purge my intolerant proteins from my body. If I have a new prescription by the time I find out if it won't make me worse, the need is usually reduced to the point where I don't need it. Very helpful - not.

I am also intolerant to soy. Soy is common in the capsule. We need a lot of progress in this area. The problem is the FDA is supported by the industry they serve --not taxes. So styrene is allowed in our food stream (meat trays) styrene is a strong carcinogenetic, but given enough money you can get anything approved. The does a good job of meat inspection, but medicine - they are not a partner of the public.

 
Frances L. Garcia, MD, FAAP
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said this on
24 Mar 2015 6:25:17 AM PST
Hello: This is a serious issue. I am a celiac and a physician. I can get information from pharmaceutical much easier than most, however, companies are reticent to provide it. They obtain non-active ingredients from different suppliers and therefor do not want the responsibility in case something goes wrong and someone is injured.Because it took about 15 years for a diagnosis in my case, I now suffer from the complications of continuing exposure: Autoimmune disease, a movement disorder, peripheral nerve damage due to B12 deficiency. This translates into a multitude of medications. The risk for gluten exposure is great. So yeah, we should demand that the FDA make the manufacture of gluten free medications a must.

 
Blue
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said this on
24 Mar 2015 8:15:55 AM PST
Our family has also found that it is hard to find the necessary information for prescription drugs. Being in the hospital can even be a problem. It is listed on the chart celiac disease but it seems as though you have to constantly "police" the nutritionist and the pharmacy. It can be exhausting. One has to depend on family members for this.

 
Teresa Boring

said this on
24 Mar 2015 8:21:10 AM PST
I'm amazed how many "common" medications have gluten in them and determining this is not an easy task. I 100% agree that medications should be held to the same accountability as foods.

 
Teresa Boring
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said this on
24 Mar 2015 8:22:05 AM PST
This is such a concern for celiacs!

 
norm
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said this on
24 Mar 2015 11:38:16 AM PST
Great molds

 
Annette
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said this on
25 Mar 2015 4:02:24 AM PST
Just like hidden sugar can be bad for diabetics, hidden gluten is bad for those who can't handle it for whatever reason - celiac, gluten sensitivity, allergies. I don't like having celiac disease, but am looking forward to the day it would be more understood by the general public.

 
Chelsea
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said this on
26 Mar 2015 8:53:43 AM PST
Of course, people should know what is in our medications.
If a pharmacist or the company cannot confirm that an ingredient is not in a medicine that is a huge problem. Furthermore, I think doctors should know if the medicine they are prescribing is gluten free. I can't even tell you the number of times my primary care physician told me to "try to eat some crackers" or to take some medication that ended up having gluten or dairy even after I've told her and my chart says I have a severe allergy. I don't even see a primary care physician anymore because if I actually followed her advice I would be just as sick as I was before I found my holistic healthcare doctor.

If the medicine had hidden sugar would diabetics know about it? It is just as serious a concern.

 
Susan Pinvidic

said this on
26 Mar 2015 11:02:02 AM PST
Filling prescriptions is absolutely the most stressful thing I have to deal with since being diagnosed with celiac disease. I have had pharmacists literally roll their eyes at me. I had one tell me "honey, there is nothing back here with gluten in it". And the majority of them tell me "I have never had anyone ask for gluten free medication" to which I recently replied.."Really? because you helped me last year when I asked for the same thing". I called the pharmacy regional manager for CVS to ask why it is such a problem to have the pharmacist check and why there is so much attitude involved. He also told me that there is no gluten in medications. Honestly, it is so unbelievable how ignorant these people are considering it is their JOB to know what is in medications and how they will affect different people. My doc does write on the RX's that the medications need to be gluten free. That statement is largely ignored. I just wish I could find a pharmacy willing to take the extra time and not treat me like I am a crazy person taking a fad diet to the extreme. We should really all get together and file a class action suit against not only the FDA but the pharmacies as well. It is absolutely ridiculous that they take so lightly what is a very serious issue for many.

 
Susie
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said this on
26 Mar 2015 2:16:24 PM PST
I have had several terrible reactions after being told "no gluten" when in reality there is. I am very sensitive and the tiniest amount of exposure dehydrates me within a half hour, not to mention all the other problems that result from exposure. In a perfect world we would be informed. I have also had an er doc mimic me when I told him I would not take anything until checking with the pharmaceutical company, this same doc asked me if I was on a "low" gluten diet. He also recorded that I was a difficult, non-compliant patient because I wouldn't take the medication he prescribed (which did contain gluten). My concern is that the medication will contain the same 20 ppm limit which is 20 ppm too much for my system. I rarely go to the doctor and look for old-fashioned herbal remedies for my symptoms instead! For those of you living in larger cities that have docs that are knowledgeable, you don't know how good you have it. I have to order a lot of my food on line or go without, no docs in this area know squat about CD and don't care to.

 
admin
( Author)
said this on
27 Mar 2015 11:59:40 AM PST
Please note that a 20 ppm top end limit does not mean that a food or medicine will actually contain 20 ppm--it means that it can't ever contain over that level when tested.

 
laura
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said this on
28 Mar 2015 7:02:43 AM PST
Thank you so much for speaking out. It is so hard on the Florida central east coast to find a doctor that understand the issue, I have to spend endless hours on research. The last example is for an antibiotic prescribed for Rheumatic fever. After 3 days of research and 3 different scrips, the pharmacist guaranteed that that specific brand was definitively gf. When it arrived a week later, I was informed that the insurance refused to pay for the gf antibiotic. The total cost would have been close to $500! I refused to take the medication because it is too costly so I was labeled "non compliant" by the doctor. The joint pain from the Rheumatic fever would have been aggravated by the smallest amount of gluten found on the less expensive generic medications. As a nurse I am shocked that a great nation like ours does not protect the consumers. Thank you again for all that are trying to find a legal solution to this problem. I also hope that doctors will become more aware and start helping their patients.

 
Coloradosue
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said this on
30 Mar 2015 1:29:44 AM PST
I would like to sign Webers Petition. Address is on the last page as well as Mr. Webers address. I would like to know how much the pharmaceutical companies are bribed (or are to cheap) to use proper ingredients to make the drugs we have to use just to survive? A lot of foreign countries (China, southeast Asia; other countries) provide so-called fillers and binders to make the medications. This also includes VITAMINS and MINERALS. FDA needs to inspect them as well. Just saying!!!!!

 
Mud
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said this on
11 May 2015 8:41:27 PM PST
I take a generic levothyroxine and a few other things, gluten in meds is a concern. Especially since our insurance requires us to mail order our meds from a large pharmo-insurance middleman (Express Scripts). Trying to explain I need GF meds and the same levothyroxine manufacturer to their Philippine call center staff is loads of joy.

 
Luann
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said this on
14 Nov 2016 9:41:27 AM PST
WOW!! I had no idea it was this bad. I have taken very few medications but 3 years ago I had major stress level taking care of my elderly Godfather. I began the anti-depressant Celexa. After about 3 months I began having severe diarrhea. 4 doctors, including UCLA Celiac Center told me not to stop the pills as I was severely depressed going to the bathroom a minimum of 40 times per day. Dizzyness is also a side effect but I did not have a problem with that until I took a Lomotil along with the Celexa. I had 2 minor car accidents in one week. Went off ALL meds and was FINE in two weeks. Two years later I tried two more anit-depressants which I began SEVER diarrhea within 48 hours of both. I never knew I could contact the drug companies. This HAS to stop!




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