Thursday, April 16, 2009

Gluten-Free Drugs

If you're anything like me (and for your sake, let's hope you're not...I'm pretty crazy, after all :)), Celiac isn't your only health concern. I'm on a few different medications for everything from thyroid problems (pretty confident Celiac caused that) to adrenal gland problems (hoping Celiac is causing that and it will be under control after being on the diet awhile...but who knows!). Throw birth control into the mix, and my kitchen counter pretty much already looked like a 98 year old woman's before I even got diagnosed with Celiac. Upon diagnosis, my GI said it was really important that I take a daily multi-vitamin, calcium supplement, and Vitamin D to help my body get the nutrition the condition is stripping me of... so, you can just imagine the size of my a.m./p.m. pill box, and the hilarious jokes my husband comes up with. :)

Problem is, drugs have to be gluten-free now too, and reading those labels isn't as easy as reading food labels. Not only are the ingredients really funky (Croscarmellose Sodium what?), but in addition, drugs aren't covered under the nifty 2006 law that states "wheat" has to be listed on the label. So, as to whether ingredients like "starch" and "modified food starch" and "fillers" have wheat... your guess is as good as mine.

Needless to say, getting me transitioned over to gluten-free meds and vitamins was an adventure. Thank goodness my hubbie is so supportive. He was on the phone with pharmacies and manufacturers for days straight. Before even finding out if my meds were gluten-free, we had to find out who the manufacturer was because most of my meds were generic brands. Fun fun stuff. Pain in the royal behind is more like it! ANYWAY, after all the research and pain we went through, I thought I'd post a few of the things we learned, hoping it makes someone else's life a little easier:

#1: http://homepage.mac.com/sholland/celiac/GFmedlist.pdf and http://www.glutenfreedrugs.com/ both have lists of gluten-free meds.

#2: Kirkland Signature (Costco) brand Daily Multi Vitamins are the one brand of cheaper, non name brand vitamins we found that say "Gluten-Free" right on the package!! THANK YOU COSTCO! We called on CVS brand, and were told they couldn't guarantee they were gluten-free.

#3-Medco By Mail is AWESOME! Our insurance just happens to do our medications through Medco, and when we called to see if Medco By Mail could tell us if my generic meds were gluten-free, we were immediately transferred to a pharmacist, who discussed my health issues, and then guaranteed that "Celiac Disease" would be added to my profile. What that means, is that every time we refill a prescription, Medco will research the medication to insure that it's gluten free before it's shipped right to my door! Talk about cool! I'll take it!

#4-The "Spring Valley" brand of vitamins carried at Walmart (light green and yellow bottles) seems to list right on the back if the product is gluten-free. (This is the brand of Calcium I'm currently using.)

#5-When we checked in March 2009, here was the status of some of the meds/manufacturers:

-Mylan: Said in an email that all their drugs are gluten-free. (This is the manufacturer of my local Walmart's generic levothyroxine at the moment).
"Thank you for contacting Mylan! Per your request to follow is information regarding the gluten content of Mylan's levothyroxine tablets, 100ug; Mylan does not add gluten (i.e., wheat, rye, barley, oats or spelt) to any of the products manufactured by Mylan. Mylan uses only synthetic alcohols in the manufacture of its products. The starches used in the products are corn-, rice-, and/or potato based. I hope this helps. If you have any other further questions please feel free to contact me at (800)848-0461 ext 4349. I am available Monday through Friday 8am-5pm eastern standard time. Thank you once again for contacting Mylan. Sincerely, Jennifer Gerdes, RN -- Jennifer Gerdes, RN Product Safety Specialist Global Product Safety and Risk Management Mylan White Birch Tower II, 4th Floor 1311 Pineview Drive Morgantown, WV 26505 "

-Sandoz: Claims that their generic levothyroxine is gluten-free.

-Name brand Levothroid is gluten-free. (This is what I'm using right now.)

-Par: This is the manufacturer of the generic dexamethasone Medco shipped me, so I'm guessing it is safe to assume it's gluten-free.

-Roxane: I got a little peeved with this manufacturer. A phone call and email both pretty much told me the same thing:
"Roxane Laboratories Incorporated (RLI) does not provide information about the composition of the ingredients used to manufacture our products. Additionally, RLI does not provide details of the quantity or content of each ingredient used to make our products. RLI products are approved by the FDAand the approved ingredient information is available within the package insert supplied with all products distributed and sold. Package inserts are also available at http://www.roxane.com/. We apologize for any inconvenience caused,and we suggest that you consult with your prescribing physician to determine a recommended course of action based upon this information. Kind Regards,Technical Product Information, Boehringer Ingelheim Roxane, Inc.Tel: (800) 962-8364Fax: (614) 308-3540"
At the risk of sounding rude, sooooooooo not helpful.

Anyway, we've switched over now...finally, and it feels like a pretty big accomplishment!

7 comments:

  1. Thank you for sharing your research also going through similar problems namely celiac and thyroid issues! Goes hand and hand and also found synthroid some genetics can no longer be considered GF... Now what!

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  2. @anonymous: Thanks for the comment. All this drug stuff is such a pain in the rear. :) I hope you find your thyroid fix (I'm on Levothroid, which I was told is the "name brand generic", and it is gluten-free according to Medco.) Everytime I get put on a new drug, the fun begins all over again. Sigh! Such an adventure! :) Best wishes!

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  3. I was told by Medco that regardless of my Celiac diagnosis, I would receive whatever brand they had available regardless of gluten status. This occurred after speaking to two of their pharmacists who told me the same thing they told you. When I received my first round of medications NOTHING they sent me was gluten free. I became deathly ill. They informed me that I could have my prescriptions rewritten for specific brands and that it would then be reviewed by them to decide if it would be cost effective for them. This process would take at least 30 days.... I obviously went back to my local pharmacy and pay more, but at least they follow through and do what they say.

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    1. I am so sorry to hear that! That is awful, and must have been very frustrating for you.

      I think that Medco must have improved and changed their procedure since your horrible experience, because everytime I fill a perscription a flag pops up telling them I'm Celiac, and they re-check with the specific manufacturer to guarantee the drug in question is still gluten-free. I know it's happening because my perscriptions take slightly longer than they used to to fill (about 1 week), and when I've called to inquire, they've told me it's because of my Celiac "flag". I haven't had an issue yet, and hope to avoid what happened to you in the future! After hearing this, I'll definitely remain on the look out.

      Thanks for your comment!

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  4. Medco got bought out is no longer the good company they once were. I have had a lot of problems with them. I think its Express Scripts now. The transition was not a good thing.

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  5. Yes, I also believe that Medco is Express Scripts now... as that's who I deal with, and yes... Express Scripts is TERRIBLE. They constantly mess up my rx's. I'm Celiac too. (dx'd 2013) Just found out today that my Synthroid may be a hidden source of gluten for me. Great. Not looking forward to changing thyroid meds. My new functional medicine dr. (who's amazing!!!) wants me to try WP Thyroid by RLC Labs. It's all natural and gluten-free. I am just hesitant to have to try to "find" my perfect dose once again. The WP Thyroid is natural like the Armour, yet no irregularities in the dose/consistency/potency that other thyroid drugs have had over the past 10-15 years. (Also dx'd Intersitial Cystitis in 2012.) 100% positive that my Celiac triggered/caused the IC. If they'd found the Celiac earlier, I don't think I would have gotten the IC. Interesting how one autoimmune disease leads to another and another.

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  6. I have celiac. Is Spring Valley Magnesium 400mg gluten free?
    Thank you
    Kathleen QuongVermeire

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